Small, little men

The national media is noting the ignorance and cruelty in Texas public policy, including the new laws that ban abortion and suppress voting rights. I would argue that the state’s policies and governance vis-à-vis people with disabilities amply demonstrates that this ignorance and cruelty isn’t new.

Elected officials in Texas have refused for years to adequately fund the medical and disability services that allow individuals to live in the community and avoid costly (especially to taxpayers) institutional care. Federal programs can pay the lion’s share of these services, and in most other states they do, but Texas refuses to expand Medicaid enough to allow that to happen. Instead, they authorize puny levels of funding for “waiver” programs—part of the federal law that allows Texas and other states to opt out with the promise to take care of people in their own way. But really what Texas does is pretend the burden doesn’t exist. Instead of fostering human progress, Texas disability policies hardwire families and communities for long-term suffering.

Sam was in kindergarten when we first moved to Texas. We followed the advice of the good people at Denton MHMR and put his name on one of the infamous waiting lists for the state’s waiver programs. Our social worker said that even though we couldn’t be sure then what services Sam might need when he was 18, we’d have no chance at help if he wasn’t on a waiting list. At the time, we were among the young families that got a little help paying for respite care and for special equipment, so we picked the waiting list for the waiver program most like that.

(Sadly, a year or two later, even that modest state program for young families ended. We were on our own.)

Families who are able to access services under these sparsely funded waiver programs understand them much better than I do. Sam made enough progress and adapted well enough that he doesn’t need the help—the kind of basic human need that tends to make allies and advocates into battle-hardened experts in the shortcomings of public policy.

But I do know that the Texas waiting lists for waiver programs are cruelly long. Nationwide, there are about 600,000 people on a waiting list and more than half of them are on a list in Texas. (For context, remember that less than 9 percent of the nation’s population lives in Texas.)

Top 10 list of shame: Waiver program waiting lists

In its latest budget, the Texas Legislature funded additional slots to get more people into the waiver programs, but not nearly enough. Some advocates and self-advocates have done the math: the Texas list is so long that individuals could wait their whole lives and never receive services.

When other states would get in this deep, they agreed to Medicaid expansion made possible by the Affordable Care Act. Waiting lists for waiver programs in those states nearly disappeared because Medicaid expansion stepped in to fund those services.

According to the Kaiser Family Foundation, Texas is among just 12 states that haven’t expanded Medicaid. Texas is, by far, the most populous state to refuse to provide services at a meaningful level and make no real progress toward that goal.

Some advocates wonder whether the U.S. Department of Justice will intervene, especially when U.S. Department of Health and Human Services officials seemed to wobble on approving the state’s waiver program earlier this year. It’s a great question, but we need look no further than the state’s troubled institutions—called state supported living centers—to see how a negotiated settlement might go. Independent federal monitors have visited those centers since 2009, after fresh reports of abuse and neglect emerged with cellphone video of a “fight club” forced on residents at the Corpus Christi center. All 13 centers were supposed to meet negotiated standards by 2014 or face further action, up to and including closure. Twelve years later, none of the centers (home to about 4,000 people with developmental disabilities) met the standards, the monitors still make regular visits, and all 13 centers remain open at increasingly unsustainable costs to state taxpayers.

Texas is growing fast and its people need a far more robust physical and social infrastructure than state officials seem to grasp. Some people see our governor moving about in a wheelchair and think he’s got the disability thing covered. But advocates know better. “He’s not one of us,” I heard one self-advocate say recently, pointing out the many, many differences between an individual who must adapt their entire life when compared to the governor’s experience, where the need for a wheelchair came much later in a life of privilege.

These days, Texans are watching their governor and the other small, little men in state leadership race to the bottom in a panic to maintain power. In that twisted race, their lawmaking and policies are displaying new levels of ignorance and cruelty for all to see. But color me not surprised, as the ignorance and cruelty has been part of their law- and policymaking for our community for a very long time.

Refrigerator Mother 2.0

Only a few generations ago, some doctors blamed mothers for their children’s autism. Psychologists wrote long theoretical papers based on their observations of mothers and their children. They concluded that autism mothers were cold and that their lack of love triggered the child’s autism.

If you stop to think about that idea for a minute, those explanations were quite a leap. And a cruel one at that.

We humans look for patterns in the world around us–it’s almost one of our super-powers. We use the information to make meaning, and create loops of ferocious thinking that make the world around us a little better.

Therefore, knowing that we’re supposed to make things better, the Refrigerator Mother explanation for autism just begs the question. How much did those early theoreticians consider and—most importantly, rule out—before concluding they’d observed a pattern of mothers who don’t love their children?

Granted, many people were immediately skeptical of these mother-blaming theories, including other professionals and autism families. The theories fell after a generation, but the damage was done to the families forced to live under that cloud as they raised their children.

And, the blame game is still out there.

The latest iteration has started in a similar way, with people seeing problematic patterns in autism treatment. Young adults with autism are finding their way in the world. Some of them had good support growing up, but the world isn’t ready for them. Some of them had inadequate support growing up, so they have an added burden as they make their way in a world that isn’t ready for them either. Some are speaking up not just about the world’s unreadiness but also about that burden. We must listen. Autistic voices can help us find new patterns and new meaning and build a better world for all of us.

We should be careful about letting one person’s experience and voice serve as the representation for the whole, because that’s how the blame game begins. Even back in the old days, when information was scarce, we had the memoirs of Temple Grandin, Sean Barron, and Donna Williams to show us how different the experiences can be. As Dr. Stephen Shore once said, if you’ve met one person with autism, then you’ve met one person with autism.

Here’s an example of how that can break down: some now argue that asking an autistic child to make eye contact, as a part of treatment service, is inherently abusive because eye contact feels bad for them. Missing from that argument is the basic context, the understanding that for humans to survive, we need to connect to one another. For most of us, eye contact is the fundamental way we begin to connect, from the very first time we hold and look at our new baby and our baby looks back at us.

I asked Sam recently (and for the first time) whether making eye contact is hard or painful for him. I told him I was especially curious now that eye contact changed for all of us after living behind face masks for a year. He said this, “Eye contact is very powerful. I wonder whether I make other people uncomfortable with eye contact.”

He’s right. It is powerful. And he just illustrated the point about one person’s perspective.

When Sam was young, we never forced him to look at us. But after a speech therapist suggested using sign language to boost his early communication, I found the sign for “pay attention” often helped us connect.

The additional movement of hands to face usually sparked him to turn his head or approach me or Mark in some way, so we were fairly sure we had his attention and that was enough to proceed with whatever was next. Over the years, we’ve shared eye contact in lots of conversations and tasks. But if not, we recognized the other ways that we were connecting and I didn’t worry about it.

All of this context—both the need to survive and the difficulty with a basic skill needed for that survival—cannot go missing from any conversation about the value of teaching an autistic child. Some people with autism do learn how to make eye contact early on and are fine with it. Some don’t. For this example, then, we can listen carefully to adults with autism and their advocates as they flag patterns from their bad experiences with learning to make eye contact and make changes. But that fundamental need to connect and share attention remains.

That’s when we also need to remember our tendency to blame others when our troubles feel intractable. Sometimes, in these fresh arguments over how autism treatment should proceed, I hear that same, tired pattern of blame I’ve heard since Sam was born. Take it from a worn-out mother who’s been blamed plenty over the years: some arguments are just another round of the same, they just come inside an elaborate wrapper of mother’s-helper blaming instead.

All the families I know truly love their children and are learning how best to respond to them. We can’t forget that parents have a responsibility to raise their child as best they can. Let’s talk, please. But please also, let’s spare the rollout of Refrigerator Mother 2.0, because it could cost us a generation of progress.

Power outages and the power of plain language

Save the warnings by the National Weather Service, our household would not have been prepared for the freezing weather and massive power and water losses Texas suffered last week. From late Sunday night through Thursday afternoon, we endured rolling blackouts as two separate winter storms came through North Texas. Unlike many Texans, we didn’t lose our household plumbing in the cold, but our city’s system lost water pressure and we were without safe drinking water from Wednesday afternoon through Saturday morning. We also had no home internet service for most of the week.

As the meteorologists gave their forecasts, the conditions looked to me much worse than they did in 2011, the last time we had a day of rolling blackouts. Since that debacle, I’d read Ted Koppel’s book “Lights Out,” a sobering assessment of life after a catastrophic grid failure. Sam has friends who eventually gave up on living in Puerto Rico post-Maria. I recognized the incredible risk embedded in that forecast. We prepared like a hurricane was coming, with extra food, water (including filling the bathtub), and other provisions. We sheltered our plumbing as best we could.

If we had been waiting for cues from state or local public officials, we would not have prepared.

Once the crisis began, it was hard to explain to Sam what was happening. We had little official information to go on. For example, I couldn’t tell him when we might be able to depend on having power again, because no one was saying. I showed him the homepage for the state’s power grid, which has a good visual for what’s happening at the moment. On the outage days, there were bizarre spikes in future capacity, as if ERCOT expected four or five generation facilities to come back online at any moment.

Of course that wasn’t what happened. During the second day of rolling blackouts, we would get a phone call once or twice a day from the city utility, telling us to expect rolling blackouts for the day or night. But those calls said nothing about the grid status or when power would return.

Electric Reliability Council of Texas grid outlook

 

After meteorologists called for warming on Saturday, we made contingency plans to get through to that day. I warned Sam that the power might be unreliable for days or weeks afterward. Power companies had rotated the power off in some places and couldn’t rotate it back on. That could mean the grid is  damaged in places, I told him.

Also, when the blackouts started, I couldn’t tell him when the power would be on or off. There was no discernible pattern and we weren’t told. After about 24 hours, the city’s robocalls suggested a basic pattern, although we predicted it more closely using our oven clock as a reverse timer. We also observed street lighting changes as a predictor when we’d be shut off. If it was particularly quiet, Sam could hear the power coming back before the lights went back on. As a result, we could plan for things we needed to do to survive, like prepare food or charge our phones.

But that adaptive mode was ours to determine, and sometimes I had to coach Sam through it. Nothing was ever suggested to us by a public official how to cope with rolling outages, or how cold your home could get before it became too dangerous to sleep there, and the like.

When the city’s water system failed, our city made daily phone calls with recorded messages. They told us when the system was failing and how to help, then they told us when it failed, then they told us how recovery was going, and finally they told us when it was safe to drink again. That communication helped.

Sam does well with most of what adult life throws at him, but one of the few things he still struggles with is “official” communication.

Frankly, we all do better when public officials communicate with us in plain language. That is one reason why the federal government adopted the Plain Writing Act of 2010. I recognize the writing style when I get a letter from the IRS or the Social Security office. They always write in plain language so that even when your situation or the law around it is complicated, they use vocabulary and syntax you can understand so you can act accordingly.

For people with autism, such plain language communication is vital. Sam would likely have suffered greatly in last week’s outage without someone with him to translate what little information we were getting and work to fill in all the voids. ERCOT wrote arcane tweets about load-shedding, for example, and asked people not to run their washing machines. Still shaking my head about that.

We’re both still recovering from the trauma of last week. The trauma was made far, far worse by the lack of communication from state officials. As they set up their circular firing squads in Austin this week, we are learning that they knew this problem was coming and they knew it was a problem of their making. I’m sure individuals were panicking and that made it difficult to make good choices, but that’s why, in calmer moments, they are supposed to write and practice emergency plans. This was foreseeable and preventable. However, in my darkest moments, I sense that the lack of communication was a choice, one they made in part to avoid blame.

This week, I’ve also been stunned by how many people stung by this abject failure expect it to happen again. They simply do not expect our state to be able to fix this mess.

I want to reject that premise, but, mercy me, if it happens again, can they at least have the decency to communicate to us, and in Plain Language?

Informed consent

Sometimes a problem comes through our family’s front door, but because I’ve  solved a problem like it before, I don’t feel the worry and anxiety I used to. That’s one thing good about getting older – the been-there-and-done-that feeling gives you confidence.

Even when something new and different comes along, those things aren’t worrisome because there’s a sense you’ve seen some version of it before. Garage sales become eBay. The Sears catalog becomes Amazon. High school’s gossipy mean girls become Facebook.

I would argue, though, that sometimes we forget hard lessons when it suits us. We solved the problem of human experiments years ago and we need to remember the solution applies in many situations.

I wouldn’t have understood the meaning of informed consent if not for raising Sam. Some interventions offered to people with autism and their families can make a real mess. The first time we agreed to participate in a true experiment, I was very grateful for the care the psychology researcher had given, and the university’s institutional review board had reviewed, to make sure our family was fully informed of the risks. You might think an experiment to help Sam and his younger brother learn to play games together wouldn’t need to be deliberately thought through, but it does. Their budding relationship mattered.

I worry about the current ethos; technological innovations are driving a lot of our interactions these days. Eager tech start-ups are taking their barely formed innovations and throwing them out into the world to see what happens without giving any thought to informed consent for fragile families and communities.

For example, I’m not the first person to notice that we are in the middle of a giant experiment with self-driving vehicles–an experiment I don’t ever remember being asked whether I wanted to opt into. A few years ago on a cross country trip, I couldn’t see the driver behind the wheel of a sparkling new big rig bobtailing down the otherwise quiet interstate. As I passed by, I tried to see if the driver was just really short, like me. I didn’t see anyone in the rig. But mostly I remember being upset that if this was some kind of test drive, I was not notified and given the option to take another route. It doesn’t matter that the sale of the automobile is in terminal decline. This experiment needs to be thought through.

When I hear “disruption” or “creative destruction” or some other jargon, it’s been-there-done-that. The words are usually masking an experiment the inventor or company hopes will make them money, and taking everyone’s resilience for granted.

Let’s not.

 

A year to be more open and connected

Two years ago, after writing a news story about a few of our clever readers and what they learned achieving their New Year’s resolutions, I did mine differently. A year into my own experiment, I had learned so much that I shared it in a column.

That first goal to not buy anything (with reasonable exceptions for food and fixing things) reinforced a simpler, more sustainable life. My next resolution, “Yes, please,” was meant to be this year’s yang to last year’s yin of “no, thank you.”

The idea wasn’t that “yes, please” was permission to give into impulses or rationalized needs, but to push through whatever had been stopping me from trying something new. How else to see the world unless you push through to the other side? I made a list of about a dozen challenges that have been nagging for years; for example, learning to better maintain my bike, sew upholstery, broaden my computer skills, speak conversationally in another language, and make cheese. But if something new crossed my doorstep, like when my friend and brilliant textile artist Carla offered a day of indigo dyeing, I said “yes.” I said yes whenever I could.

Not only is life simpler and more sustainable, but it’s also richer and more fun.

That brought the social media expression of my life into sharp relief. For the coming year, I will co-opt Facebook’s stated mission, to be more open and connected, by quitting Facebook.

The main reason to shut down my account is one that has nagged me for a long time. Facebook’s real mission is nothing like its stated mission. For example, I’ve noticed there are people you cannot reach any other way than through Facebook. I’m not saying that’s a bad thing. In Texas, we might share a lemonade on the porch and we’re cordial, but we just don’t invite everyone inside. So I would argue that when you can’t reach someone except through Facebook, then you aren’t really connected at all. Facebook is managing your relationships for you through the veneer of being “open” and “connected.”

I set up the Family Room blog as a place to explore ideas related to living with autism. It’s interesting that most readers come here via a Facebook link and will return to Facebook to comment on the topic, rather than connecting below and creating our own community–which, by the way, is not open to exploitation by a third party because I filter and delete all that garbage.

That’s Facebook’s real mission. And, they “move fast and break things.” After I watched Frontline’s two-part special, The Facebook Dilemma, I couldn’t be a part of it anymore. American newspapers are struggling because Facebook (and similar businesses) got the rules changed: they can publish with impunity while newspapers must continue to publish responsibly. It’s expensive to be a responsible company. But it’s worth it because, for one, the truth is an absolute defense. And people don’t die in Myanmar because you got so big moving fast and breaking things that you can’t clean up after yourself anymore.

It took Sam a while to accept my decision. He was worried that my exit would affect his experience. I respect that very much. People with disabilities need help living lives that are more open and connected. He finds community activities through Facebook. Because he can scroll at his own pace, he can absorb and react to more news that people share. He’s not impervious to the third-party nonsense, but he’s not going to show up at a fake rally meant to destabilize the community.

I’ll still be on Twitter because I use the platform for my job and I can’t escape it. And I know my departure from Facebook may affect my coworkers, so I will work to ameliorate that. I hope that readers who want to continue to be part of Family Room will use the green button below to bookmark the blog and come back once a month or so. This blog isn’t going away even though the Facebook teasers will.

My first objective will be to use my words to be more open and connected. Family Room will be one place to make that happen, along with all of the other ways we’ve always had to connect with each other (insert mail-telephone-plus-ruby-slippers icons here!)

My second objective will be that when I have something to share, I will share it with the person I believe would appreciate it most.

My third objective will be actively listening to others in the coming days and weeks. Because the best way to connect is to respond.

Sam taught me that.

Other lessons stated out loud

“Our children are not us … and yet we are our children; the reality of being a parent never leaves those who have braved the metamorphosis.” – Andrew Solomon, Far From the Tree.

 There are so many lessons from life with a child with autism, it seems important to share at least some of them.

I have two other children who make it into these pages in ancillary ways, but that is not an accurate reflection – at all – of their presence in our family.

Many things that happen in our lives are examined in thoughtful ways, but not everything that happens to our family gets lived out loud. I want my children to have their own lives.

For this little essay, I’m making an exception. Two years ago around Halloween, something happened to Michael that needs to be lived out loud.

He took a date to a costume party, and he’s alive today because technically he and the girl weren’t “dating.”

(Confession: I don’t understand kids and dating these days.)

He had graduated college earlier that year. His date was in her senior year, so the party they attended was full of college-aged kids.

As they were about to leave, someone handed his date a glass of champagne. She wasn’t a fan, so they shared it.

His date lived about 30 minutes out of town. A family friend happened to be at the party, so she rode home with him.

Michael hopped in his car and drove the 5-minute trip back to his apartment.

A minute or two after he got home, he knew he was in trouble. He stumbled to his room, vomited, passed out on his bed, and woke up at noon, although he was groggy and out of sorts all day.

His date, by the way, passed out on the way home. The family friend had to carry her to the house.

Michael didn’t tell me what had happened to them until weeks later.

The glass they shared, as near as he can guess, was laced with something meant to knock her out.

(Confession: I asked him the classic victim-blaming question, don’t you all know not to accept a drink like that, along with a thousand other questions that had few satisfying answers. It wasn’t hard to imagine a drastically different outcome had he driven his date home.)

This was not the first time something horrible happened to Michael and I was not to find out until hours after the real danger had passed.

That is how it is when you send your children out into the world.

It is not a good feeling.

Some of us parented our kids to know that life is not a stage and all the men and women in it merely players.

Clearly, some parents did not.

Reflections on nine years and three days

Saturday we took care of errands ending up at the grocery store just before lunchtime. About halfway through our trip, we saw an assistant manager leading three new trainees around the store, pointing out the location of various items.

Sam stopped and watched for a second. Then he announced that three days before was the ninth anniversary of his date of hire.

Wow. Time flies.

The good people at Albertsons hired him as a courtesy clerk the summer after he graduated high school. He had help from a job coach, hired by the state, to make sure he got off to a good start.

Sam has received lots of raises through the years but he hasn’t sought promotions to jobs like checker or stocker because he doesn’t feel the kinds of problems they manage are the kinds of problems he could solve quickly.

 

IMG_1842

His favorite part of the job is retrieving carts. If you catch him heading out the door to fetch carts, you will see him ride a cart like a skateboard to the far side of the parking lot. He tells me it’s a move he invented.

Sometimes, he says, the managers tell him there’s enough carts for now, and he needs to come back inside to help sack groceries.

He’s a good sacker, but he he thinks that the speedy sacking champions who used to make an appearance on The Late Show with David Letterman are just crazy.

Although I don’t have it on any authority at all, the store seemed too quiet after Wal-Mart opened at Rayzor Ranch. But recently, it’s been busy no matter what day or time I visit the store. I don’t know the reason, although I have my theories. People are struggling with the construction on University Drive. And more than once I’ve heard someone say they are tired of the crazy parking in the lot outside Kroger.

Who knows how much longer he’ll be there. He just headed out the door right now to walk to work. He’s a cheerful, reliable employee. When we were shopping yesterday, everyone, including the store manager, stopped to say hello.

As wonderful as working at Albertsons has been, and will likely continue to be, Sam should be celebrating his second or third anniversary in the tech sector. That’s what his degree is in. That’s where his talents are. That’s what the contract says with his new job coach.

The IT sector is desperate for employees. Sam’s brother, Michael, didn’t major in IT, and yet that is where he landed. It’s hard not to feel irony’s burn. We worked so hard to get to this point. Sam’s ready for the world. But the world isn’t ready for him at all.

 

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

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.

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