How Can We Educate the Public About Infertility?

I was a guest on the Bitter Infertiles podcast on Sunday. Boy, I miss those girls!! This blog has become such a mishmash of fashion and infertility and even lifestyle posts. But it’s important for me to note that it started as an infertility blog, a personal diary detailing my own journey with loss and then became something else: an advocacy tool to try and publicize the real ALI stories out there: the ones no one hears about. The ones 1 in 8 are struggling with. Your friend, your sister-in-law, your colleague would tell you these stories if they could.

My experience with the Ricki Lake producers was really wonderful in the end: they publicized my blog post about Faces of ALI on their site via Twitter and so much traffic and wonderful emails and comments came in. There was no negativity. And it made me wonder: perhaps there needs to be a SHIFT in the way the story is told to the media.

It was quite clear at BlogHer that Martha Stewart, Katie Couric and even the Today show are increasingly looking to bloggers to tell the stories. Katie Couric actually asked us to pitch her stories about untold issues Americans are dealing with: Kathy Benson and I both tweeted about the ALI community.

I am a former PR person who dealt with product launches, political campaigns, controversial issues and even court cases. I was quite good at my job, actually.

But things have changed. I was listening to NPR this morning and there was an interesting debate about peer-based platforms and how they have grown. Silicon Valley has established a totally different way to run things: more bottom up, with engineers more in power and a less top heavy structure.

This was on top of another NPR story about a preponderance of evidence that statistics don’t change people’s minds: STORIES do.

It made me think: We need to tell our stories, sell them even, to media outlets who are open. And it seems like a lot of them are open.

Because here’s the thing: all of our stories are full of the human experience. Our stories display great hope and love and dramatic arcs. I feel like one story could occupy the gifts of some of our greatest storytellers. Our ordinary stories are not ordinary at all: they are extraordinary. I know that reading Faces of ALI changes viewpoints: that NPR story is right.

There was some talk about putting together a blogger platform (a peer-based platform, as it were) as a place for us to tell our stories and share them with others.

What do you think? Can we change the crappy narrative currently being told? How? What ideas do you have?

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14 Comments

Filed under Faces of ALI, Infertility

14 responses to “How Can We Educate the Public About Infertility?

  1. SRB

    I am not a PR person and suck at ideas, hence preaching to choir at LCN and PAIL. But, I’m ready, willing, and able to be a soldier and help create/run/maintain/advertise whatever is needed to bring our stories to the pubic for advocacy, sensitivity, and normalization. We deserve it. It’s time.

  2. Wow you are a true inspiration. I do believe so many woman associate the word infertile with shameful. Us “infertiles” are strong and determined and with more people like you our voices can be heard. Maybe society wouldn’t be so judgmental. I only hope that something like this happens. I have even asked a bunch of girls I know to write a book about their struggles. So many of us have such different underlying factors but two common bonds… Loss and infertility. I started my blog to just get my thoughts out of head but realized that the bond us infertiles share is so great. We formed a secret Facebook page. These girls have become my strength when I just didn’t want to fight anymore. If I could just help one girl I have made a difference and that’s all that matters! Kudos to you and your work! Our Voice should be heard! Xoxo

  3. I completely agree that it would be good to get out voices out there and heard. Most weeks I open my heart and story to my subscribers as way of encouraging them and I know they appreciate this.

    I am saddened by the way the media often portrays fertility -often they just don’t get it, I can understand why most people who haven’t been through it find it hard to understand which is why it can be such a lonely place – hence the need of getting stories out there.

    Would be happy to help in any way I can. Often think there is a need for men to share with men as well.

    Russellx

  4. Thanks for picking this up, Jessica. Since our conversation on the podcast, I’ve been wondering about this myself. To hear that the media may finally be ready to hear from members of this community and to tell our stories is hopeful. Still, I worry about the temptation they will have to twist them, making them more sensational and ultimately painting us as a whole in a negative light (SIF has written a whole post about this regarding her piece with the Huffington Post)..

    In short, we need members who are willing to share their stories with the public who are also willing to go through a PR-type bootcamp. Just as any public speaker preps and prepares, researching to make sure they have the necessary information to handle expected and unexpected questions, so too should we train our advocates. This most certainly won’t cure the sensationalism problem, but it will greatly reduce it.

    I guess my point is I’m cautiously hopeful. But also not naive to the dangers of this. So many good things are poised to come from people sharing their stories and putting a face to infertility, loss and adoption. But it’s still possible for it to go horribly wrong. Hence the need for preparation and training.

  5. Part of the problem, I think, is that infertility is always treated like a “marginal” subject. The media doesn’t do a spot on infertility-as-part-of-family-building; they do a spot on infertility. Because it’s taken out of the context of “normal,” it becomes easier to sensationalize or paint ALI in a negative light. In some ways, weird as this sounds, we need to stop seeing ourselves as, and acting like, a marginalized community. We are part of the spectrum of normal. It’s not a beautiful or happy part of the spectrum, but there it is. I feel like the story needs to be told in its entirety, from the perspective of a larger diaspora.

  6. I would love to be a part of this….I’m not very good with public speaking, but I can write to my heart’s content(not always well either, but better than if I tried to speak in public). Feel free to contact me, I have an email page on my blog, to let me know how I can help! Thanks for taking this on….it’s not an easy challenge, but it certainly needs to be done!

  7. I’m honestly not sure what the right answer is. It seems like every time I get excited to see infertility in the media, I wind up disappointed. In the end, I think it comes down to making our voices louder than theirs. You know I am always on board for anything that might make a difference though!

  8. You know I’m down with helping out as much as I can, and I think that this is where we utilize our network to get out the message, but I also like the idea of pitching our stories to outlets instead of waiting for them to come to us. It’s time for US to control the message and that our extraordinary stories are ordinary; we aren’t on the fringe and desperate.

    At the Internet Summit I attended this week, I heard a few things about new media that stood out. According to Sarah Lacy of Pando Daily, to be a successful blogger, you need to combine a brilliant or unforgettable voice with a platform larger than you. So, say, combine your story or Mel’s story or the other brilliant ladies in the ALI blogosphere with the power of a Salon or the NY Times or the Huffington Post. Another session on content strategy highlighted using “citizen journalists” for fresh voices, especially since they are on the ground. Also, when I asked what is considered “high-quality content” (oft-used, seldom defined), someone tweeted back “original, insightful, valuable and what your audience wants.” I rolled my eyes a bit at that definition b/c it doesn’t tell you how to be original, insightful or valuable, but what I thought was interesting was that this focus on quality content was finally legitimizing amateur writers because their voices are needed.

    I’ve got some further thoughts on figuring out what your audience wants and how we can spin that to get out our stories, but let me digest the conference a little bit more.

  9. Wordgirl

    I personally am currently writing anovel whose character deals with infertility as an important part of the narrative –it isn’t the entire narrative is just a part of it but I certainly hope by getting a true narrative out there that reflects the reality of many people, like me, who have dealt with and are dealing with infertility… I hope it will be read, widely reviewed, and frankly optioned for movie rights and ultimately a terrific movie made… I guess a girl can dream right?

    Tell Deathstar that she can play herself!

    Xo

    Pam

  10. I think things like your blog and your ALI series is a big help. I wonder if Slate (the XX factor page) or Salon would pick the series up? It’s really amazing work that you’ve done.

  11. I have no good suggestions how but would live to participate if someone has any good ideas!

  12. I unfortunately have no good ideas but would love to participate somehow!

  13. It would be cool if we could develop Faces of ALI as its own website in addition to a book, and if you wanted your story to go there, you could go through a PR-prep webinar in case someone contacts you as a result of your story there, write your story in some semi-scripted way so they all vaguely matched in narrative format, and then maybe include pictures of people too because I think pictures also sell. It makes sense to start with a group of representative folks from across the spectrum of ALI and have them trained as spokespeople before the website launches. Devan McGuinness from AccustomedChaos.com writes for babble (and about going through newly diagnosed infertility) and sometimes things from babble get picked up by HuffPo, so that might be an in (maybe a series of interviews with Faces of ALI participants or something?) and it might be worth pitching to someone like Babble to have an infertility column separately somewhere rather than just within the Being Pregnant blog, where they’ve had an infertility blogger for maybe a year now at least (or a “trying to conceive” blogger, if you will).

  14. love the idea of a campaign to push for real coverage, to remove the stigma and move these issues into the mainstream without sensationalistic coverage that leaves readers judging those struggling to build their family or choosing less traditional means to do so.

    maybe keiko’s appearance on katie could be a jumping off point, a way to highlight and connect other stories. I do think to go viral that you need a larger platform, as keanne said. still FB and twitter can help.

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