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The Individual and the Whole

I’m having a difficult time starting this post.  I sort of wish I had kept all of the earlier beginnings rather than erasing them.  I’m also trying to remember to not write things such as “flogging a dead horse” because we’re talking about PETA.  I realize that jokes like that are quickly turning me into the least popular person on the Internet.

And I do love animals.  Remember that whole vegetarian thing?

So last thoughts since I can tell from some of the comments on that last post as well as other people’s blog posts that they wrote as a response that I touched a nerve and I’m going to be speaking about this topic this week (more on that in a moment).  So I’m going to start off this post with a story about ice skater Johnny Weir of feathery costume and clockwise jumping fame.

Back in January, Johnny Weir was in People magazine (I read only the most erudite texts) speaking about coming out in his new memoir.  It was the first time Weir formally came out and stated that he was gay in the media.  Prior to this point, he had refused to answer questions about his sexuality, pointing out that it had nothing to do with his performance on the ice.

He had been pressured greatly by gay publications and websites to come out, presumably because of the good that could come from having the bridged attention between his accomplishments on the ice and the communities to which he belongs.  It would have been a chance for gay teens to have him as a role model.  For the general American public to say, “hey, we used to think crap-ass things about gay people, but this Weir boy rocks so hard that we’ve rethought all of our small-minded ideas.”

At least, that’s always the hope.

Weir writes,

All the gay websites couldn’t figure out why I was such a jerk that I wouldn’t talk about it.  A lot of the gays got downright angry about my silence.  But pressure is the last thing that would make me want to “join” a community … The massive backlash against me in the gay media and community only made me dig my “closeted” heels in further.

It made me think about all the times we wish a celebrity would come out and admit that they used donor eggs or IVF.  How much it would help our community if the general public could see a well-loved, successful figure as part of our community.  Because we need people to put it out there, to talk about infertility in a public forum.  We need people to talk about it on the personal level and we need people to talk about it on the media level if we want to generate understanding and evoke change.  And damn it, nothing spreads word like a celebrity endorsement.

And yet, what about the needs of the individual?  The one who doesn’t want to be told that they’re morally obligated to join the community just because they happen to fit the definition of the community?

I think that balancing the needs of individuals with the community as a whole was a huge part of the PETA campaign.  On one hand, there were people who needed to voice their anger at PETA.  It was what was best for them for their own emotional health, and I think to deny that need for the sake of the community as a whole would be like cutting of your nose to spite your face.  I think first and foremost, individuals need to have peace of heart because communities are made up of individuals.  In that regard, I feel that the individual is more important than the community as a whole.  It’s sort of in the vein of the put-on-your-own-oxygen-mask-before-assisting-others in airplane emergency situations.

(At the same time, we all know that for a community to work, we need to make sacrifices.  We need to forgo our individual needs for the greater good.  But right now, we’re talking about the individual.  Just pointing out that a counterbalance exists.)

There were also people who didn’t want to speak out, and they should never be berated or feel like they let the community down because they needed to not engage in the PETA campaign.  I think when people mindfully don’t engage, it’s not apathy.  It’s a conscious choice that is just as passionate as activism.

So where does that leave us?  How do we balance our individual needs — what we feel in our gut is the right thing to do — with what I discussed in the last post — what is best for the community as a whole?  Since many times, they are in direct opposition to one another.

A little while back, there was a Huffington Post article that I wrote about and I’m being taped this week for an Internet radio show about it that will air during NIAW.  The other two people on the show are Barbara Collura from Resolve and the author, Dina Roth Port.

I think the guest breakdown is interesting.  We were all obviously chosen to speak because we all had something to do with the article.  Port wrote it, Collura was quoted in it, and I addressed it.  But we also represent this struggle between the individual and the whole.  I am obviously presenting my individual point-of-view.  I don’t speak for this community…

…wait, I’m going to actually separate this out and say it again here because I’ve been told by others in the past that I do: I don’t speak for this community.  Your thoughts may align with mine, and then it clearly makes sense for you to stand beside me with those thoughts (you may disagree with me at other times).  But I present my own personal world-view.  And I would hate for the outside world to think that I am speaking for you because I don’t think that individuals should (unless done tongue-in-cheek) speak on behalf of other individuals without their clear consent.  And I don’t have your clear consent.  Therefore, when I go on that radio show, I am presenting my own point-of-view.

Okay, back to the show.

So I obviously am there presenting as an individual.  And Collura is there presenting as the voice of an organization — Resolve.  And Port is there as the go-between who asked individuals to set aside their needs for the greater good of the whole.

I am very comfortable speaking about infertility, and I always have been.  It wasn’t a point I needed to get to, it was a place I started at.  I also have a great support system, a family history of infertility, and I live in a major city.  These three points make it easy for me to be comfortable speaking about infertility, and I’m well aware that if I didn’t have those three things, I probably wouldn’t have started telling people about my wonky ovaries immediately upon discovering that I have wonky ovaries.

I think everyone has their reasons for wanting to speak out or not speak out.  Johnny Weir didn’t want the focus to be on his sexuality instead of what he was doing on the ice.  Resolve wants you to add your voice so we can get understanding and support.

And both are legitimate needs — the individual ones and the community ones — and the discussion needs to be how we balance it.  How we stop ourselves as a community from pressuring people to speak out and how we push ourselves as individuals to do so when we think it will help us in the long run. (I’m not a big fan of telling for telling’s sake.)

I both agree and disagree with Port that our silence is what is stopping us from getting insurance coverage as she states in her post:

However, what I didn’t realize is that infertility patients’ reluctance to discuss their struggles and advocate for change is directly preventing those affected from getting the support and funding they deserve.

I both agree and disagree that talking about it is going to create the change we wish to see.  The GLBT community is incredibly well-organized and vocal, and yet talking about issues and getting the facts out there hasn’t created a smooth road towards everyone accepting gay marriage.  On the illness front, I think we can still see the stigma that those experiencing mental illness deal with daily in terms of both public perception and insurance coverage — and they have a whole branch of NIH!

Which isn’t a reason not to talk about it.  To not fight against the PETAs of this world.  To not support Resolve’s Advocacy Day (May 5th, people!).  That would be apathy.  Letting the outside world beat you down like that — beat the words out of your mouth or out of your fingertips — would be the tragedy.

Because yes, even though it doesn’t make a clear difference, I still think we should fight the good fight.  When we can.  And to step back when, as individuals, we don’t feel like we can lend our voice.

By which I mean, if your stomach is in knots about coming out on your Facebook page for NIAW, I don’t think you should unless pushing yourself past that point is your personal goal.  But I think if you’re like me and talking about infertility is as comfortable as admitting that you’ve read all four Twilight books (by which I mean that you’re slightly embarrassed but generally defiant), then hells yeah — get out there and educate.  And regardless of which side of the speaking spectrum you fall, we are all part of this terrible, wonderful, heartbreaking, close-knit community.

And I count myself lucky (and obviously unlucky) that we’re all in the trenches together.  But like any good platoon, I have your back and I know you have mine even if, as individuals, we sometimes need to hang back or fight as we see fit.  Okay, so that last part isn’t really analogous to the military at all.  But I think you know what I mean.  Don’t lose who YOU are in all of this.  It’s individuals who make up the whole.


1 Christina { 04.12.11 at 8:14 am }

Bravo! You most definitely can stay true to yourself while being part of a community. I think your reasons for not addressing the PETA campaign make total sense. There is a huge difference between ignoring an issue or not taking any action (apathy) and choosing not to get up in arms over it.

How strong would a community be if it was made up of people that were all exactly the same? How seriously could that group be taken?

2 Kaitake { 04.12.11 at 8:27 am }

Awesome post. Just awesome. I wish we had a Resolve and a NIAW over here in New Zealand. I have been speaking out semi-publicly and talking to various authorities to try and make them see some sense over rules they have in place over who gets treatment and when. Found out that a doctoral student of reproductive technology policy studies reads my blog and now is asking me to participate in her study. Most excellent! Every little bit helps 🙂 great post Mel 🙂

3 Kathy { 04.12.11 at 8:34 am }

“I think when people mindfully don’t engage, it’s not apathy. It’s a conscious choice that is just as passionate as activism.”

I love this statement Mel. As I said in my comment in your previous post, the older I get, the more I appreciate that choosing not do something in any situation is truly a valid option and a choice. And I do believe that there are times when it is appropriate and even the right thing to do not to take action or confront a person, people or situation.

I like the story you shared about Johnny Weir and GLBT community. Analogies like that really work for me/help me to understand things and I think that was a great one.

I am excited to hear the interview that you are doing with Barbara Colloura and Dina Roth Port during NIAW. As I shared at the time, Port’s article was the last straw in my deciding to “come out” about my blog earlier this year to extended family and friends. I had been considering it/wanting to do it for awhile and it sort of gave me an excuse to finally “just do it.”

Anyway, thank you for another wonderful and thought provoking post. I appreciate your statement that you do not speak for all of us in the ALI Community. Though much of the time I do agree with a lot of what you think, say and write, there are certainly times when I do not see things and situations the same way. That said I am very proud of you and grateful that you are such a powerful and effective voice for our community. Thank you for being you and for giving so much of your time and your life to raising awareness about ALI in ways that you are willing and able to do.

4 Chickenpig { 04.12.11 at 8:59 am }

I totally give you my permission to speak for me 🙂

For me, it is a very difficult line to walk, between myself and the community. Infertility for me is merely a medical condition, and therefore is by its very nature, private. If I had a gallstone or irritable bowel syndrome I wouldn’t feel the need to talk about it with everyone. I am also in the situation (as are most of us) in that my infertility is only half MY problem. The root cause of our infertility is my husband’s wonky sperm. Many of the friends I have on FB are my husband’s friends and family, he is uncomfortable discussing ANYthing private with them, and it isn’t my place to ‘out’ him.

There have been many comparisons made between cancer and infertility, that people with cancer have no problems being part of a community and being active in it. But that isn’t always the case. Both my grandparents died of cancer, and neither one of them told any of us until they were under hospice care. My mother battled skin cancer, and she told no one, especially her co workers because she was afraid of being laid off and losing health coverage. And right there is the crux of the problem: insurance coverage and money for research. I have been covered by health insurance for infertility, mostly because my husband’s company is incredibly forward thinking in this regard. (someone in management who has suffered infertility, perhaps? hmmm….). I know that this is rarely the case, and when it comes to battling infertility, money changes everything. It allowed me to think of infertility as just that little medical bump in the road that could be resolved as long as I had the will to continue. Having money available for people to adopt (beyond the paltry tax credit) would be great too…but that is a whole other row to hoe. For that, I am willing to speak, if not for insurance coverage I would not be a parent. Maybe not on FB, but I tell my congress ppl often.

You can quote me on that, Mel, and speak for me. I just wish that situations would allow me to speak. Maybe next year…

5 Dev { 04.12.11 at 9:01 am }

I get this, totally. I am semi open about my infertility-if someone asks I tell them, or I will mention it in a conversation. I don’t put it all out there on facebook, for me it’s not something I want to share with the whole population. It’s not because I’m ashamed, but more because there is so much backlash that can be received, and it’s not just me anymore. I may tell the world that i’m infertile, but not that I used an egg donor. I also have my daughter to think about. Infertility is a taboo subject itself, but when you add in a donor scenario it makes it so much more controversial, I don’t need or care to hear other peoples opinions.

I can completely understand why a celebrity wouldn’t want to share that information either, because while many people (like you) are completely comfortable sharing, others are not.

I am glad that you are a voice for those of us who choose not to speak out.

Thank you for all you do.

6 serenity { 04.12.11 at 9:34 am }

My good friend, who has Stage IV cancer, recently told me that she’s trying to figure out how to balance LIVING with her cancer. Because, she said, it’s easy to get swept up in the fight against cancer, and have it become her focus. So, her goal since she finished chemo is to take back her IIFE. And assimilate cancer into it, instead of it being her focus.

I think my challenge, 5 years into our diagnosis and nearly at the end of treatments, is to figure out how to make IF a part of me, but not the focus of my energy and life.

And part of that is to make sure that I take the fights on I know I can win. Which is grassroots education with the people in my life, NOT fighting against ogranizations like PETA, who have actively COURTED the anger of the masses in order to gain publicity for their stunts.

But see, that’s me, as an individual. But you know something? I’ve HAD my time where I felt like I could fight, where I focused on education of everyone I met, where I COULD take a stand. I’m just not there now – and not sure I can be there again.

That’s the benefit of this community. When one individual flames out and is in a quiet place, there are others who feel strongly who step up and speak. And those individuals will change over time.

7 Heather { 04.12.11 at 9:55 am }

See…you got it, baby!

I often feel like I’m supposed to be “part of the gang” and fight like hell. Truth be told, I am not big on confrontation.

Sure, it would be easy for me to talk about how I defeated IF, had a baby, lopped off parts of both of my boobs, lost my uterus and ovaries, AND then adopted a baby. A baby in an open adoption that turned out to be anything but the baby we thought he was. So then I look like an ass. And I’m just not ready to fight just to fight. I want to fight a real fight…like to keep my kid alive.

So, Go…Go speak for me. And I’ll just sit here and cry about it! xoxox

8 Justine { 04.12.11 at 11:17 am }

Thanks for posting this, Mel. In response to the PETA blog, I encouraged people, too, to bust infertility myths, to approach the campaign from the back end. But I also wrote that people need to do what they are comfortable doing. If we can educate even one person, we’ve made progress. And I know that it’s MUCH easier for me now, having had my second child, to speak about infertility, about our miscarriages, about how we were treated by doctors, than it was when we were going through all of that. On the other hand, even though I don’t speak for the community, hopefully I can speak on behalf of someone who doesn’t yet feel she (or he) has a voice.

9 Katie { 04.12.11 at 11:59 am }

I completely agree with Justine in that while I don’t speak for this community, I do hope that some of what I put out there speaks for someone who doesn’t want to “come out of the infertility closet.” It took me a long time to talk about what we were going through, but once I did, I didn’t stop. Now, I post about my ovaries on Facebook just as easily as other people write about what they ate for dinner. It’s not a big deal to me, but I completely understand why it is for some people. You can (and should) only do what you feel comfortable with.

By the way, I am perfectly fine with you speaking for me. You are a wonderful representative, and while not every single person here agrees with one another, you do an excellent job of bringing us together and making us TALK. And that is the most important aspect of this community. Even if we are simply talking amongst ourselves, we are still having a conversation that’s important.

10 Bodega Bliss { 04.12.11 at 1:10 pm }

I’ve been thinking about this a lot…the balance of speaking out vs. remaining silent. I’m trying personally to find it in my “real world” life, and I’m not quite there yet. And the Facebook thing has definitely been on my mind.

At for PETA, I am so glad you wrote this post. I’ve been feeling a sense of guilt because I chose not to write about it. I felt like I let my community down, that maybe people were disappointed in me. My passion just wasn’t there for it, even though I tend to love animals more than people (my husband knows my dog comes first). That’s why I felt guilty. All these amazing people in this community had that passion and anger, and mine just couldn’t be directed towards PETA. It just didn’t seem right for me personally. But I felt bad for that, and I couldn’t figure out why. You just explained it perfectly. Thank you for this.

Despite not speaking out about it, I had everyone’s backs who did. I hope they know that.

11 Lacie { 04.12.11 at 3:28 pm }

This is a perfect, to the point, knockout of a post. Thank you.

I couldn’t fight the PETA fight. I just couldn’t bring myself to do it only eight weeks after the loss of my twins. I am still grieving and couldn’t help but to take some of their jabs (in responses to e-mails that others have posted) to heart. There were such condescending and judgmental statements coming from that organization that I had to take a step back and let others fight the fight. It was better than to allow it to hurt me further or be all-consumed with it. I just had too much on my emotional plate to be able to deal with it.

I sure as hell am grateful for those of us who did fight. I screamed a silent, “YES!” when I read that they changed their joke of a campaign.

So, from one who sat on the sidelines cheering the rest of you on, I was proud to part of your team even though I was riding the bench.

12 Sushigirl { 04.12.11 at 4:45 pm }

For me, and what I’ve learned from campaigning for other things, is that everyone can be active to a degree they feel comfortable. If you’ve posted about PETA openly on your Facebook and everybody in your life knows then that’s great. But if you can’t do that right now, it doesn’t mean you can’t do anything for the IF community; you can blog anonymously, tell close friends, write an individual letter, make a donation, comment on someone else’s blog. Some things are more effective than others and being ‘out’ is very powerful in your immediate circle. But that doesn’t mean that everything else doesn’t have a place too.

13 Marissa { 04.12.11 at 5:28 pm }

I wanted to add one more reason why speaking up about infertility can be difficult: it’s a couple’s disease. I have no problem letting the world know I have to do IVF. But when they ask *why*, it becomes tricky. What right do I have to go public about my husband’s sperm issues? They directly affect me, true. Because of his sperm, we as a couple have to do IVF, and I as an individual have to inject other people’s urine into my stomach. Good times.

My husband is really good about the whole thing, but to tell all of Facebook that his swimmers don’t swim (and have weird flippers) isn’t really my right. Pressing him to do it could cause strain between us, which we don’t really need as we approach the difficult waters of discussing donor sperm and such.

I don’t know that there is any other disease that can affect a spouse quite like infertility. I *feel* infertile, but technically, am I? And do I even want to have that conversation? Because it’snot about blame, it’s about solutions, and saying “my husband is the problem” gets us nowhere.

Ask me about my wonky ovaries is one thing, but ask me about my husband’s zero morphology is another, you know? I’m not ashamed of it, but I’m not the only one involved.

(Also, I ignore all of PETA’s publicity stunts. They do more damage than good, IMO, so I didn’t feel the need to address this campaign any more than I did their ‘Ben and Jerry’s should use human breast milk’ one.)

14 loribeth { 04.12.11 at 7:56 pm }

I’m totally with Sushigirl. I’ve written on my blog before about the “tell or not?” dilemma. It’s funny how I feel totally comfortable spilling my guts on my blog & on my message boards, but shy away from addressing the subject with my “real life” friends & family members, at least the ones who haven’t been through IF or loss too.

I admire, & am grateful for, those of you who can & do speak out openly about your experiences to your family & friends. I’m just not there yet. I may never be. But I do like to think that I’m doing my part in other ways, through my volunteer work in the past, & through my writing — even if it’s not being read by the people around me.

15 Rebecca { 04.12.11 at 9:25 pm }

Amazing, beautiful post!!! Thank you so much for sharing & for encouraging each of us to find our own voices in this crazy world!
I’ve been very open about our infertility struggles with so many people both through blogging and in real life, but I’ve never “outed” myself on fb, considering it this year for NIAW. There is something very freeing about it and I can’t help but think about all those others in the trenches that may realize they’re not alone. I’ve been surprised more and more these days by how when sharing about our own struggles I discover others who are also fighting infertility right along side us.

16 Mali { 04.12.11 at 10:49 pm }

The Port article and Lisa’s post (Life Without Baby) on it prompted me to “come out of the closet.” I have an infertility blog (No Kidding in NZ), and a general everyday blog. I didn’t link the two, and readers of the everyday blog didn’t read the infertility blog. They knew I didn’t have kids, and why, but I rarely mentioned it. Likewise on Facebook, where I’d linked with lots of overseas friends I knew as a student.

My infertility is kind of obvious to people who know me well – two ectopic pregnancies, and eight years later no kids. I’ve selectively told other people, depending on their attitudes. But on the internet I’ve been entirely open about it.

“Coming out” was nerve-racking. I still worry that my frank posts might upset people (and in fact, I know one of them has done so). But I’ve done it. It is harder perhaps to do in real life, but as the years go on, it is definitely easier. And the thing is, I want to be “out” now, to be a voice for myself and others (if I reflect their views). I couldn’t have done this even five years ago. Speaking out when we’re ready is very different than being forced to speak out when you’re feeling vulnerable and exposed. So I thank you for your feelings on this. And good luck for the show!

17 Kristin { 04.12.11 at 10:59 pm }

Mel, I love everything about this post. And, I’ve got your back sistah!

18 Brandy { 04.14.11 at 5:45 pm }

This is great! You always say things way better than I ever could and make me realize things that I unconsciously thought, but couldn’t articulate.

This time last year I was in the middle of my second IVF cycle, which ultimately didn’t work. I wanted to go to DC for advocacy day, but was scared to officially come out.

Now that we’re done with treatments it’s like I feel free to be able to come out and tell everyone. It was too much pressure before, but now, I don’t care who knows. I’m trying to reclaim my life and focus on something other than my ovaries, and being an advocate for infertility is one of those things that interest me.

19 Esperanza { 04.20.11 at 7:57 pm }

Oh Mel. I love you and I love your posts. You must find yourself in a difficult situation when people feel they can claim you as their (our) spokesperson and co-opt what you say or try to mold what you say to meet their needs. I can’t imagine how strange that would be. But I loved your message today. I think you’re right that people should only do what they feel comfortable doing. I relish speaking about my loss. I want others to recognize and validate it. Many pregnancy loss survivors do not and I respect their positions too. And while I will post things about my ectopic on Facebook I don’t expect others too. We need to do what we can do or want to do and shouldn’t feel bullied by anybody for those choices. Thanks!

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