The Daily News

LFCA Latest Issue: Friday, September 25, 2009.

Latest Post on BlogHer: Parenting after Infertility.

My Status: Fed Josh's almonds to the squirrels. They needed them very badly.

Monday, June 16, 2008

The Infertility/Cancer Debate

We're still Showing and Telling below. The list is always open through Tuesday, so keep checking back on the list or add your own entry.

Deathstar wrote on Pamela Jeanne's blog a week or two ago something that I've been tossing about in my head for a bit:

"Cancer can kill you, infertility just makes you wish you were dead."

Cancer often comes up as a debate with infertility. It's a strange connection since one disease is life-threatening and the other disease is life-style threatening. One does not trump the other in my head--I don't see a huge advantage to being alive if you wish you were dead--though I can see the problems with the comparison. You can live with infertility without treating it. The same cannot be said for most cancers.

There is so much cancer floating through the infertility blogosphere at the moment, this idea seems to be at the front of my mind.

Infertility bears a stronger comparison to deafness. Deaf culture is filled with slang terms utilized by insiders, etiquette rules, and fine art. Deafness, in and of itself, can be experienced as both a detriment and loss as well as a gain (and frankly, while I wish I weren't infertile, think of how much I wouldn't have life-lesson-wise and friendship-wise without infertility). One can live with deafness without working around it--it is certainly not life-threatening. But it is life-style threatening if a person doesn't find a means to communicate.

And there is controversy within the community too--those who opt for cochlear implants, those who don't. Those who choose to lip read and speak, those who don't. There is both hierarchy and leveled community at the same time--shades of deafness (and who hasn't wondered if they're "infertile enough" to be called infertile even with a diagnosis in hand) and also the common bond of deafness trumping the hierarchy of deafness.

I've spent a decent amount of time at Gallaudet--the only deaf college in America. My cousin went to graduate school there and even after she graduated, I kept going back because it's a space I like to visit. It made me wonder if there could ever be an emotional equivalent. OB and midwife practices that are solely for those pregnant after infertility (Gallaudet, at least back when my cousin was there, had a rule that all undergraduates had to have some hearing loss). Child-free amusement parks (it looks like Disney World, it smells like Disney World but you don't have to stare at the sleeping baby that inevitably ends up in front of you while you're waiting in line). Is there a need for a collective space like that? Is our collective space the fertility clinic or the adoption seminar? The Resolve meeting?

It's an interesting thing--need vs. want. Does Deaf culture need its own university? I would say yes. Does ALI (adoption, loss, infertility) need its own space and can we agree that ALI has its own culture--it's own internal slang, etiquette rules, expression in fine art: elements of culture?

28 comments:

My name is Andy. said...

That's a very interesting analogy, and very acurate one.

good food for thought on a Monday morning.

PJ said...

My mother in law AND my sister in law both battled breast cancer twice. So, I always try not to compare anything that I've been through with what they went through, because IF is not life threatening. But I do see it as life style threatening, because it means if all of this treatment doesn't work, then I'll have to reevaluate my life and my place in this world.

nycphoenix said...

I think the analogy is a good one and I think ALI is mostdefinately a sub culture of that kind. Enough so that speaking with non ALI people feels awkward right now.

Lori said...

Yes. ALI is a subculture, and has its own slang.

But I would say that its walls of ALI-land are more permeable than those of Deaf Culture. People do move in an out, and/or the identification with IF ebbs and flows as life does.

That's speaking for myself and my experience. Not everyone reading at this point in time would agree with me.

**susy** said...

ALI is definitely its own culture. The more I get involved the more I see that. I think the comparison to deaf culture is a pretty good one. I was JUST talking to hubby abt 'what' IF cld be 'compared' to this weekend. I too, worked w/ the deaf and hard of hearing community when I worked as a relay opr. They count on each other and understand each other just as we do in our own ALI world...

Kymberli said...

Clever and accurate analogy. We do have our own sub-culture and community here in the blogosphere and where and whenever bloggers manage to get together.

Tracy said...

Very interesting and thought provoking post. I think the answer to your question is yes.

Journeywoman said...

I would LOVE an ALI Disneyworld. I also like the analogy.

Andria and Co. said...

Great post. Infertility still has a long way to understanding by those who don't face it. Right now, I'm working on a post (should be finished this week) about how some women think that women who already have children shouldn't undergo fertility treatment... that, we should be happy with what we have. Suffering from secondary infertility, I strongly disagree.

Jess said...

I would kick someone's ass for an OB/GYN for only post IFers. Honest. That would be.so.wonderful.

WE NEED THAT. Mel! Make it happen!! :)

Barb said...

Articulate and intelligent. I agree with you.

Just me said...

You have put words to my ever constant yet never was quite right quest to finding the best analogy with how it is to be infertile. Thank you! Why though (unlike the deaf) is our ALI world so incognito when I am out and about in the real world?

Tash said...

Interesting. I just told someone that the only conversation I've had about my appearance (an honest one, about how I've let myself go in every respect) since Maddy's death was with a woman going through chemo. We both mourned this other person we used to be. We both had to find a way to accept (not necessarily love, but accept) the new us. But she has to keep fighting it; I eventually succumbed and got my hair cut. Sometimes I rue that she has something to fight and I do not, but I am grateful that I don't have the fear. I am left only with the mourning. It's tricky, but there are many overlapping areas here, and we can learn a lot from each other's strengths and weaknesses, vulnerabilities and fears.

Ultimately like PJ above said, I try not to play the comparison game -- I've learned people respond to very bad things in varying degrees based on their internal wiring and support systems.

armsforanangel said...

I too find that a perfect analogy.

I'm not sure if I would prefer to have an ALI Disneyworld. Perhaps being stuck behind that infant caused me in many ways to grow and understand myself and my reactions to the circumstance. I would feel like I was hiding from the world. Yet, I do believe there should be an ALI restaurant!

Anonymous said...

As an interpreter for the deaf (like, literally, that's what I do for a living) I really liked your analogy! I have always thought ALI is a LOT like deaf culture! Including the fact that to be Deaf you can have only slight hearing loss, and those who have no hearing could be labeled Hard of Hearing depending on how they view themselves. Just like people who have been trying for years who think they aren't 'really' infertile because they aren't seeking treatments.

Heather said...

This is a very accurate analogy - IF and deafness. I think we do need our own space. I often do think of finding the local Resolve meeting. I wish they would be able to post meeting info in all the REs offices in the area to let us know without us having to search too much.

Io said...

I 41st the kudos for the deaf analogy. Nothing is ever perfect, but that is pretty good.
I think the comparison to cancer has some similarities, but I hesitate to compare too much because there is that whole death thing.

Rachel said...

Interesting. But I have not seen any benefit at all from my infertility. I hope nobody takes offense at that, but I would much rather have had a baby easily (or even have simply had one of my pregnancies work out) and never have met anybody in the infertility world and never have read an infertility blog. Without a doubt. Without even having to think very hard about it. Without any inkling of a question. I wish none of this infertility crap had ever happened to me.

Samantha said...

That is an interesting analogy, and one that is closer than the whole "cancer versus IF" comparison. I think Lori has a point that sometimes infertility has more of an impact on your life than others, whereas deafness is always there. An infertile person who has children can choose to leave IF hidden away, but someone with deafness will always have to decide how to handles things with every interaction.

I think IF is misunderstand because in many ways it is unique. It does cause lifestyle problems, but only in those who decide they want children. Deafness is a problem that must be dealt with the moment it strikes.

katedaphne said...

This was a very thought-provoking post. I have heard that analogy before -- and I've used it before. But today was the first time I actually thought "I'd rather be infertile than have terminal cancer." It was a big step for me. Although I know mostly it came from inside myself, it also came from your post being the right thing at the right time. So, thanks for that.

Kim said...

Great post! I have often had a lot of these same thoughts. Yes, I think ALI is a subculture. I don;t think there needs to be an ALI university or anything but it would be fun to have a place to all get together!

MamaSoon said...

Amazing post. Just great. Love the analogy and I feel very much part of ALI. I'd be lost without the support and the community.

nancy said...

Goodness. This one got me thinking. And I don't even think I'll be able to come up with a response any time soon.

Thanks for another thinker.

Kami said...

I would love to have an ALI only OB and pediatrician.

There are times when I thought cancer was better - you either beat it or you die trying. Sometimes I have wondered why IF doesn't kill you - it would be more humane. But then even one good day makes living worth it.

loribeth said...

Very interesting analogy! I do agree that infertility has its own culture. And it would be nice to have our own IRL space where we could drop by & feel supported at any time. There are support group meetings, but they only tend to be once or twice a month, & generally only in larger centres.

docgrumbles said...

I actually really like the deafness analogy (especially since you can't have partial cancer and I do feel I would be the infertility equivalent of hearing impaired but not fully deaf).

No, we don't need the special or separate community, but it is so darn appealing! Sometimes you want to be around people who are like you - a place where you are the norm rather than the freak.

Bea said...

An infertile space? It's nice. You tend to have to make your own. That is, you have to bring your own people.

I have always maintained, however, that the world needs child-free spaces, for those who - for whatever reason - feel the need to be without little ones hanging around. Not just bars, either.

Bea

handjive76 said...

I am also a professional sign language interpreter. I find the analogy to be most fitting in that one really has to be on the inside of the culture (IF, Deaf Culture, etc.) to really *get it*.