rants
Out like a lion
Tomorrow is the first day of April and the first day of autism awareness month. I don’t think I will participate in the blue-washing this year.
This month has been filled with numbers. I was going to funny-blog about one of them — passing the 2,000-mile mark on my running odometer — but now I don’t have the heart.
I distance run because my friend, Susan Sullivan, got sick. She is known to many as Runner Susan, for her running blog that turned into a shale blog for a bit after she got sick. She had to have a hysterectomy because her girl parts were filled with tumors. I told her, when she was recovering, that I would run with her when she got well. I’d already lost some of my girl parts by then. More than two years later and we are still running together.
Ever since Sam was a toddler, I’ve been running a different kind of run with Sam. When he was born, autism was rare, about 1 in 10,000 to 15,000 births. This month, the Centers for Disease Control and Prevention came out with a new estimate: 1 in 68.
That number represents a financial burden that will crush us. The estimated lifetime cost of raising and caring for a person with autism is $1.4 million, compared to about $250,000 to raise a normal child. When today’s kids with autism are adults, there will be just 67 other people for each to help shoulder the burden.
If our kids are the canaries in this coal mine of environmental assaults, this run-away incidence rate clearly hasn’t been the bitch-slap policymakers need. I cannot understand why they can bring themselves to regulate with the precautionary principle sometimes and not others.
If the need is for more immediate threats, like people, even kids, getting cancer, that doesn’t seem to be driving the message home either. In the Virginia Environmental Law Journal, University of Texas professor Rachael Rawlins had things to say this month about the health impacts of shale development on policymakers. The UT press office summed it thusly:
Rawlins examines the Texas Department of State Health Service’s cancer cluster analysis conducted in response to parents’ concerns about seemingly excessive cases of childhood leukemia in the suburban community of Flower Mound. Although the state acknowledged that gas industry emissions include benzene, a carcinogen known to be associated with leukemia, the state dismissed further analysis with a preliminary study after concluding that it was not able to confirm with 99 percent certainty that cancer rates were significantly elevated in Flower Mound, Rawlins writes. Rawlins explains that, even when the state confirmed elevated rates of breast cancer with 99 percent certainty, it was too quick to dismiss the possibility of an association with toxic emissions.
The article reports on a reanalysis of the state’s data prepared by UT Austin researchers in collaboration with Dr. Maria Morandi, a faculty affiliate and former research professor from the Center for Environmental Health Sciences at the University of Montana. The reanalysis found, with 95 percent certainty, that rates of childhood leukemia and childhood lymphoma in Flower Mound are significantly higher than expected; there is only a 1 in 20 chance that the difference is random. In science, 95 percent certainty is considered the norm.
(Oh, yeah, the old breast cancer story. Now where did Josh Fox and the Merchants of Doubt over at the Associated Press move the boxing ring for that story again? Wait, wait, don’t tell me it’s time for my annual defense again.)
I’m feeling dark today. March is going out like a lion and I just don’t feel like lighting it up blue. But you all go ahead and have fun.
Blue Floofie, created by Maddy Mathis
Vaccines. Just do it.
Until I finished Seth Mnookin’s book, The Panic Virus, it never occurred to me that all of the autism community could face backlash in the future if the anti-vaccine movement continues to take its toll.
I don’t blame vaccines for autism. Scientists have been looking for connections for years and they haven’t found any. Autism rates are continuing to rise even though they removed the mercury preservative from vaccines years ago. And, the study that supposedly linked autism to the MMR vaccine was compromised. (That’s the short version of the science, for the exhaustive, researched version, reach for Mnookin’s book.) It’s distressing that people who should know better, and people in positions of trust, promote parent choice to withhold vaccines as somehow cautious and thoughtful.
It’s not.
This week, we learned of a serious local outbreak of the measles traced to the members of a church that holds an anti-vaccine position.
You wouldn’t take your child to the doctor and then not follow the treatment protocol. That would be heartless and irresponsible. Some people get as mad as a bumped bed of fire ants thinking about changes that could come because of the Affordable Care Act — mercy, you might have to wait for care, or be denied a high-cost treatment option in favor of something less expensive. But somehow you want a choice now, passing on a well-established protocol that prevents some of childhood’s killer diseases? That’s irrational, and irresponsible.
How irresponsible? Derek Bartholomaus keeps a body count.
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.
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.
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.
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 —
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| 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 » |
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| 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 » |
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| 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 » |
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| 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 » |
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| 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.”
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.)