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Clearing Up Thoughts On Action

Three things I want to clear up from the last post:

Actually–I think I need to state this point again in case it was missed: I want awareness, I want remembrance, but I don’t want to stop there.  I want action too.

I used October 15th as an example of an awareness/remembrance day in the same way I used breast cancer awareness month–simply as another example of a place where the lack of clear purpose means that the full impact of the day/month/event isn’t realized.  October 15th has the potential to be a great rallying cry of a day for the loss community, but it hasn’t found that voice yet collectively even though some individuals use that day to educate though the formal event for that day is the candle lighting.

It doesn’t really work as an awareness day–a candle lit in a house in the evening doesn’t invite others to learn more about loss.  It does work well as a remembrance day, and I think advocates would do well to reinforce the idea of remembrance instead of mixing it up with awareness.  It is a great, community building, comforting project.

I wouldn’t want to expand the meaning of October 15th to include infertility and honestly, I wouldn’t want to establish an awareness day for infertility at all.  We sort of have one that moved from the fall to the spring last year.  I think awareness days are great if they’re a first step to something else.  Even Resolve has recognized that it’s better to use that energy to establish action (such as Advocacy Day) rather than use that energy to establish awareness.  Resolve has sort of held off on huge events during awareness week and instead uses Advocacy Day as its big rallying point.

So just to reiterate–October 15th is a loss remembrance/awareness day.  And loss is tied to infertility in some cases because pregnancy loss is part of the textbook definition of infertility (three losses or trying for one year without a pregnancy).  Some people come to their diagnosis of infertility via loss.  Some infertile men and women also experience loss.  And some men and women experience loss, but not infertility.

Which brings us to the second thing: people mentioned the good points about breast cancer awareness month and while no one can say that remembering to do a self-breast exam or being more aware of risks is a bad thing, neither of these things directly benefit those experiencing breast cancer.

Do you see what I mean about the problem inherent in this awareness month?  It becomes all about me rather than about them.  I learn something that helps myself.  But how do people with breast cancer benefit from that?  I would rather have a day where I receive a message of not how I can protect myself with early detection, but how I can be a good friend to someone experiencing breast cancer.  I obviously know people who have the disease–help me know what to do.  What are good questions to ask?  What aren’t?  What are good tasks to do that could potentially help?  What are good intentioned tasks that might actually hurt?  Are there foods that are better or worse to eat?  Are there times when visitors would be more of a hindrance than a help?  And tell me why so I understand and can make other choices from that information.

It’s not a one-size-fits-all sort of thing so each person will have their own answers, but it can help get a conversation started between those who are uncomfortably clinging to the sidelines because there is just so much we don’t know and awareness months aren’t helping us learn.

Which brings us to the last part: When I stated that I hope there’s more action by next October, I didn’t mean specifically on October 15th.  I meant that I hope we’re not this stagnant a year from now.  Less talking and more doing.  My ideal would be “doing” moving in three directions: making family building possible, educating others, and making life better for those experiencing infertility.

And I’m firmly against starting new things when there are so many balls already rolling that could use energy behind them to make them successful.  So for the first, get behind Resolve and go to their take action page.  And then…er…take action.  They’ve already done the hard work of helping keep efforts focused on the important areas.  Don’t just talk about how you wish you had mandated coverage–be part of the movement that is working to get and maintain mandated coverage.

If H.R. 213 doesn’t pass, the adoption tax credit will drop on December 31, 2010.  Get involved in ensuring that adoption remains a financial feasible option.  People who are involved in adoption activism, what are other things people can do to put ideas into action?

Write letters, ask your local Resolve chapter how you can help with an organized effort aimed at your local congressperson, make phone calls.  Wait, wait, you got that part about not starting new things and splintering our efforts?  Get behind established organizations that have been doing work to ensure that your voice is heard.  And also, you have a blog–use it to spread awareness.

Those are all things specific to infertility (and in the case of H.R. 213, adoption).  In speaking specifically to the loss community, there is action to take too: support organizations that do active work to help individuals such as Now I Lay Me Down to Sleep.  There have been ongoing efforts in states to create what are called “stillbirth bills” which are establishing certificates of birth resulting in a stillbirth.  You are better equipped to speak to what must be done; this is just a starting point from what I’ve learned from you about late term loss, stillbirth, and neonatal death.

In terms of the second part–education–get good writing out there to counterbalance the media coverage of infertility.  Get stories in local newspapers, send letters to the editor, pitch articles to magazines.  This is about establishing facts concerning the emotional, physical, and financial realities of infertility.  If people learn something that helps them too, all the better.

Lastly, in making life better for those experiencing infertility–well, I wish more people would work to understand infertility and gracefully allow those experiencing infertility to help themselves without guilt.  Especially as the holiday season approaches, which brings up so many emotional responses to external stimuli.

But I don’t expect a lot in this area, even though I want this very badly.  If we haven’t taken breast cancer awareness further than raising money for research or learning about early detection, I can’t expect infertility awareness to extend to people asking if they can bring over a meal during a transfer day or extend permission to skip a difficult baby shower.  And this is a reminder that I need to do better myself in asking friends with other health concerns how I can best support them.

I still wear my pomegranate string, but for me, this symbol has always been internal to our community.  A nod to others who recognize the symbol to open a conversation, exchange information, and provide support.  The symbol was chosen because it was inexpensive and readily available.  It could be mailed cheaply to others who don’t have access to craft supplies.  It was discreet and didn’t invite a lot of conversation.  I’ve worn mine for over three years–I have only had one person approach me about it.  Which is fine–it has done its job.

Do I wish we could take it to something less discreet–sure, but I also know that most people do not want to talk incessantly about infertility because it is a disease that not only affects themselves, but it affects their future child.  And while some people are comfortable putting information out there about themselves (I’m infertile), they’re not comfortable putting information about their child (he’s adopted or she’s a DI-child).  I am, and maybe you are, but not everyone is.  And beyond that, some people plain don’t want to talk about their reproductive organs.

Oh–wait–last thing.  I do have a fourth thing.  I am inclusive.  Not all organizations or people are.  Some people choose to only focus on biological infertility instead of also including situational infertility.  Some word things so you know they’re only talking about straight, married couples.  Some keep a very narrow definition of infertility.  I don’t.  I don’t think it’s healthy to exclude people (I think both people get hurt with exclusion) nor do I see the point when more can be gained by strength in numbers and strength via understanding.  I will support the hell out of those who have a different journey from my own in the hopes that they will also support me.


1 Half of a Duo, Raising a Duo { 10.21.09 at 7:31 am }

Mel you gave me a lot of things to ponder.

First off, I’ve never been a shy one about discussing human reproduction or educating others on infertility, ever. It the subject comes up, I’m more than happy to discuss with the uneducated-take-their-fertility-for-granted masses.

My blog seems to reach people from many different areas. Those seeking answers outside the norm to address infertility. Those who see hope and inspiration that after decades of yearning and trying, I am finally, Half a Duo, Raising a Duo… decades after infertility hit me.

I am glad that you inclusive. I will be sending a friend of mine over here who is a traditional surrogate, and is now technically infertile. She had her tubes tied after her journey was over, confident her family was complete and that was the only journey she would ever embark upon.

The pull of helping other couples who are infertile, especially non-traditional families, turned her to becoming a gestational carrier. So she is infertile yet able to carry for others, to help create families.

I know you have others on your blogroll who are surrogates and am glad for that. I am glad you include every spectrum of infertility the means by which familes are built… especially after loss.

2 Minta { 10.21.09 at 9:17 am }

I think you raise great points, Mel. It’s nice to have a day of rememberance, but I know in our house is everyday is a day of rememberance. If there is going to be a national day of anything it should spur support (real, tangible, immediate support) for the people affected (i.e. action) regardless of the subject (breast cancer, loss etc…).

3 niobe { 10.21.09 at 10:32 am }

Many thanks for the clarifications. I’m a little slow sometimes, but this makes your point clearer even to me.

4 A.M.S. { 10.21.09 at 1:13 pm }

I’ll probably sit down and write a more well thought out post on this, since I’m currently swamped with laundry and packing and making sure the boys will be fed while I’m gone and trying not thinking about actually being gone. But I wanted to add my two cents while I could remember what they were.

My feelings about it are this:
It is more important to me that steps be taken to make people aware of pregnancy and infant loss, to get them to donate to research into prematurity, to make sure they know all the things they can do (as much as possible) to ensure a healthy pregnancy and infancy than it is for someone to do something for me (other than spare a thought for Lennox and Zoe to keep their memory alive in a greater sphere than just me and my family). Yes, the loss of my children and my two subsequent pregnancies is something I live with every single day, but it matters more to me that we do everything we can to work to reduce the number of families who have to go through what Shannon and I went through. I think the needs of families who have experienced pregnancy and/or infant loss are so varied and personal that it would be difficult to say “These are the things you can/should do for someone in this situation” without it just being a generic list of things you would do to help anyone in a bad place. It might be more helpful to focus on empowering people who need it to feel ok about asking for what they need, to understand that you are allowed to say, “Hey, I’m in a bad place right now and this is how you can help me.”

I guess my strong feelings about raising money and increasing what little knowledge there is about prevention comes from that big, over-arching “Cause Unknown” label that hangs over the PPROM, Zoe’s death, and the two miscarriages. I just can’t stand that I don’t have answers and that maybe I would if there were more funds for more research and that if there had been more research maybe we would have known what to do.

Did that make any sense? I’m not disagreeing with your take on it, I’m just so wrapped up in the whole not having any explanations thing that I see any opportunity to get people to pay attention, to realize the extent that this touches lives around them, and to donate money to organizations like Resolve and March of Dimes as a really really good thing. And because pregnancy loss does tie in to infertility, I think it could help move the perception of infertility so that the general public might see it as a disease to be treated instead of just stubborn people desperate for children, which might help eliminate all of those misguided articles on ART and (hopefully) improve insurance coverage.

Ok…crazy rant over. I hope it makes a modicum of sense. Back to trying to fit five days worth of stuff into a carry-on bag!!

(Hope the flu leaves the Ford household quickly.)

5 jamie { 10.21.09 at 7:10 pm }

As infertiles we experience Disenfranchised Grief. I read this on a birthmothers blog as she used this as an example on how dealing with her grief as a birthmother is.

This dis­en­fran­chised grief is when the grief is con­nected with a loss which can­not be openly acknowl­edged, pub­licly mourned or socially sup­ported. In many cases of dis­en­fran­chised grief, the rela­tion­ship is not recog­nised, the loss is not recog­nised or the griever is not recog­nised. The loss of a child through adop­tion is usu­ally a loss which can­not be openly acknowl­edged, which is why moth­ers often suf­fer in silence…people who have expe­ri­enced any type of loss often feel anger, guilt, sad­ness, depres­sion, hope­less­ness and numb­ness and that in cases of dis­en­fran­chised grief, these feel­ings can per­sist for a very long time. The lack of recog­ni­tion of their grief often results in them hold­ing on to it more tena­ciously than they might oth­er­wise have done

6 Barb { 10.23.09 at 6:40 am }

OK, so not really related to this actual post (but related by reason), but I just wanted to say thanks Mel. I luvs ya. I love your inclusive attitude and kindness. This community probably would be much more divisive without you (kids vs not, primary vs. secondary etc) And I know I wouldn’t have the energy to deal with it.

(c) 2006 Melissa S. Ford
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