Monday, March 3, 2014

Medical Marijuana, Endearments and The Washington Post

At the Ballard Chittenden locks, Seattle, Washington
February, 2014


This morning, I opened an article in The Washington Post with this title: 'Mommy Lobby' Emerges as a Powerful Advocate for Children. I wouldn't be going out on a limb, here, when I state how demeaning I find this title, much less how inept. First of all, I worked for years as a parent expert with national organizations dedicated to improving the access to and quality of healthcare for children, and as both a leader and collaborator with other parents and a mother of a child with special healthcare needs, I can state with much confidence that most of us don't like to be called mom or mommy by the medical establishment, much less a newspaper. Secondly, the lobby consists of fathers, too, particularly out here in California where single fathers of children with severe epilepsy have served as pioneers for their children and their access to medical marijuana. The fact that this lobby of impassioned parents is reduced to the title mommy lobby underscores some of the most frustrating problems with our hierachical medical/pharmaceutical establishment, particularly the lobby's need to nearly BEG for something to happen.

The rest of the article is informative in parts, but not one single mention of the relative inefficacy of FDA-approved drugs for tens of thousands of children with epilepsy is mentioned. I didn't see a single mention of the combinations of drugs that our children are subjected to, either, their often vicious side effects, and the FACT that many of them have mechanisms of action largely unknown. It would seem, by the article, that mommies are standing in front of legislatures all over the country and begging for lawmakers to help them to save their childrens' lives and their families' quality of life, while other mommies are heroically dropping this scary, unknown substance into their witless children's mouths. Nowhere in the Washington Post article is any sort of acknowledgement or even deference to the grotesque inadequacies of current treatment for refractory epilepsy, the labyrinth that many parents have navigated to get "approved" treatment, the serpentine path from diagnosis to adequate care, nor the enormous expense of the almighty FDA-approved medications that our physicians have, basically, thrown at us after a selection that conjures images of a dart game in a bar.

I don't have any answers to this and feel blessedly grateful that I live here in California, was one of the first people to obtain Charlotte's Web for Sophie and that it has helped her dramatically. I will tell you that I feel increasingly enraged, if not surprised, by the response of the medical establishment and the media to this groundswell. I'm powerful, but I'm not a mommy, and because this is my blog and my platform and not a reasonable place where I have to work rationally in front of the Powers That Be, I'll tell the Washington Post this:

You can start by speaking with veteran parents of the epilepsy world about what they've experienced for decades. You can acknowledge that parents begging for treatment from their legislators is ridiculous. You can stop using phrases like mommy lobby.

Oh, and as the incomparable actor Matthew Mcconaughey's character says in Dallas Buyers' Club (who fought similar battles during the early AIDS years): Fuck alla ya'll.

20 comments:

  1. Amen, sistah! It's such a convenient, quick way to marginalize women who are working as advocates to call them "mommy." Instead of acknowledging that one of our greatest assets as women is our ability to feel empathy and seek to nurture others, it becomes "cute" and "sweet" to raise our voices and paints a picture of us as not informed, but passionate all the same. And you are right that it completely disregards the fathers/men who are working to advocate for their children as well. I hope someone at the Post hears you and comes knocking on your door for some insight and research. The journalists of today who insist on jumping on the hottest story bandwagon without spending much time actually talking to those who are affected make me crazy, as do the folks who write headlines that have relatively little to do with the stories they introduce. You are my hero. Keep up the fight!

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  2. Funny - I just finished writing a comment on that article on the WSJ website. The discussion around this issue, particularly in the "big" national media (local sources seem to do better) is so bizarre and so patronizing. They only go halfway into the issue, and don't really try to understand seizures, epilepsy, or the choices parents face. I think the tide is turning, and I am glad that these issues are no longer invisible. But I am hoping that the media stops sensationalizing this soon ("Desperate Parents Want to Give Their Kids Weed!!"). By the way - Dr. Devinsky DID NOT HELP!

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  3. Oooh - and I got a patronizing smackdown from an neurologist! I must have done something write. Just finished my response to him/her.

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  4. I saw that. "Be grateful," Kira! HA! HA! HA! I wrote a comment, too.

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  5. This entry is wonderful, but only people who already know your situation and agree with you are reading it. Why not start by writing Op-Eds, and encouraging other parents in your situation to do the same. Very few Op Ed pieces are written by women, and it would be a way to get your voice and message heard by a much wider audience. You are a great writer, and what you are saying here needs a wider audience. Have you ever seen the Op-Ed project? Check this out: http://www.theopedproject.org/ Not only do they have submission information for the top 50 news outlets, but they also work to mentor under-represented voices in mainstream media, voices like your own.

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    1. Most Op-Ed pages do not publish response s to Op-ed articles. I would have to tweak my posts to make them stand-alone. Thank you for your support, though!

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  6. What KrisT said ^^^^^^. Elizabeth, you are so well-placed to do some opinion writing, and it honestly wouldn't be much different than what you write on the blog -- don't over think it. Every single point you made here and in the previous post about the prior article is salient/relevant/easy to understand. AND the fact that you're a parent expert (versus a "mommy") lends credibility to your voice. The Op Ed Project is the perfect partner for you!

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  7. What a horribly demeaning and belittling term!!! "Mommy lobby," indeed.

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  8. How condescending can they be? This makes me furious. You have educated yourself to the point where I am sure that you know as much about the subject as many doctors and I am certain you are not the only parent to have done so.
    And you know, it's interesting that you cited Dallas Buyer's Club because the message of that movie is essentially that medical science moves way too slowly and that sometimes the people have to figure it themselves. To the best of their abilities.
    I love you, Elizabeth. You are so powerful.

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  9. Unfortunately, I don't see what reporters write in respectable papers changing anytime soon…. I only believe the face value of what I read in the mainstream media these days Mommy lobby seems to be a catch phrase … one that would not have existed in my mother's era… so I will take it to mean that mothers are much more comfortable speaking out than they ever used to be (when it comes to the power of the medical establishment and in advocating for their children) and now exist as a political force to be reckoned with in our culture.
    How's that for a positive spin to get me thru the day.. I also think your post should be sent to the Washington Post's op-ed to lend some credence to this debate but I think we can look forward to more silly headlines like this one in the future.

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  10. Just another perspective here. A few years ago, a friend who is considerably younger than me started talking about "mommy bloggers.' I had never heard this phrase. But this mother with a high-paying, high profile job was extremely enthused about them, along with her friends, and that still is the case. So when I read the Post article, I thought about that and also about the extremely powerful MADD organization. I have been on both sides of the media fence, in the business, and now during my so-called retirement doing publicity for a volunteer organization. I totally get where you are coming from Elizabeth, don't get me wrong. But to be honest, if I placed a story in one of the few big newspapers left standing after the industry's decimation I would be really happy, especially if it created an association with the high-profile "mommy" groups. It is a buzz phrase and yes definitely is silly but it does get attention. I might have some people in my group who would disagree, and I would say to them, "I hear you, I really do, but trust me and just wait..." Please know I offer this with all respect for what you have said about the matter. And I hope you are okay with me weighing in with these thoughts.

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    1. Thank you, Cece, for your response and your perspective. I really do appreciate them. However, I feel very, very strongly about language -- particularly when it's condescending and/or trivializes a population and certainly NO MATTER whether it "gets attention" or not. That being said, the issue of "mommy blogging" and "mommy lobbyists" is secondary to what is, in my opinion, just plain bad reporting and journalism. As I wrote in my post, there has been very little accurate and careful coverage of the concerns of people in the epilepsy community, and much that is patronizing. If you even take a look at the comments of the article itself on the Post, you can see a neurologist weighing in with some of the most patronizing language you could imagine. Would it be any different if we called female senators who have children Mommy Senators? Or how about a Mommy Justice? Using the term "mommy blogger" makes my skin crawl, probably because it sounds infantile, but I'm not going to put up a stink about that. Using the term "mommy lobbyist" trivializes the very important and grave matters that these women are bringing to the table.

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  11. I especially like the last sentence.

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  12. Hi Elizabeth,
    As I've said before---I love your writing. I must admit I wasn't offended by the term when I read it. I see what you mean by trivializing but I guess I am just so damn grateful when epilepsy gets some coverage in the media. The way I see it; parent's voices ARE being heard now and the chorus and listeners are growing. That is a good thing. Having lived with the despicable beast called epilepsy for nearly a quarter of a century now (my son Michael) sometimes I get weary and perhaps less vigilant regarding the use of certain words. Thanks for waking me up!!

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  13. I didn't read the article in great detail, but it seems their failing is to use the term "Mommy Lobby" without sourcing it. If one of their sources or experts used that term and the paper quoted him/her, I wouldn't find fault with the paper -- I'd find fault with the expert. (It IS a demeaning term.) In this case, though, it looks like the Post made it up -- it's unclear.

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  14. well said! i especially like what you wrote in reply to the comment above.

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  15. Journalists seem to be reaching more and more often for the clever rather than informative headline. They rush through their stories. So many are just plain sloppy in the details. I don't care about this when it applies to Jennifer Lawrence tripping over a traffic cone, but whoever writes that sort of story should not be the same quality of writer who takes on something so critical as this story. Where are the editors? And where oh where are the women on the staff who don't speak up when they see other women demeaned? Elizabeth, I wish you could be the person the nation turns to on this one. You know so much and your writing is so powerful.

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  16. Thanks for not being mad at me! Out of habit, I did wonder while reading where is the backup to the "mommy lobby" quote, and did not find it elsewhere. That was considered a no no in the places where I worked, back when. The Post has lost millions of dollars over the years and hundreds of newsside employees have left through buyouts and defections, including the first female managing editor at the newspaper. So maybe these are contributing factors. Also, was the phrase considered "click bait?" No way for me to know. However, people in the business always said that the Post was "a reporter's paper" compared to New York Times -- "an editor's paper."

    I am so interested in this issue. Anecdotal of course, but a very conservative Chamber of Commerce type relative was starving many years ago during cancer treatment until marijuana allowed him to eat, generally perk up, and survive. This was all a big secret until a few years ago when I was told the source was a deputy who took it from the evidence room because he could not watch his friend die. And not long ago a very good friend had a seizure, alone in her office, as her legal, prescribed medications were becoming less effective. She did not make it. She worked for the government in the legal field and felt any form of marijuana even marinol was not worth risking her job. I think about this and my friend every day. All good thoughts to you and yours Elizabeth.

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  17. Yeah really! "Not one single mention of the relative inefficacy of FDA-approved drugs for tens of thousands of children with epilepsy is mentioned."

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