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.