New book explores the many paths of infertility, 'an identity that never goes away'
This post has been updated.
On Wednesday, Democratic State Senator Kelda Roys and Democratic State Representative Jodi Emerson took steps to expand access to fertility treatment, when they introduced the Wisconsin Building Families Act. It aims to remove economic barriers by requiring health plans to cover fertility treatment and preservation services. Similar measures have been passed in 21 other states.
Infertility is a disease that affects 1 in 6 couples across the world, according to the World Health Organization. But as common as it is, struggles with infertility often stay in the shadows.
The new anthology Infertilities: a curation explores the many faces and feelings of infertility, through personal essays, poetry and art. The book aims to spark conversations and break open dominant narratives surrounding infertility. It also offers a resource not only to those navigating infertility but also family and friends who want to support their loved ones.
Maria Novotny is an editor of the new book; co-director of the arts organization, ART of Infertility; and a member of the steering committee for the Building Families Alliance of Wisconsin, an advocacy group that pushed for the new legislation. Novotny is also an assistant professor of English at UW-Milwaukee.
This interview has been edited for length and clarity.
Tell me about this book. It's an anthology, pulled from a project long in the works. How did it begin?
This project is born out of a larger organization that I've been running with one of the co-editors, Elizabeth Horn. We started about 10 years ago, a project called The ART of Infertility, largely because we had our own infertility experiences at that time. We were running peer-led support groups and really grappling with what it meant to be infertile. Both of us were taking a break. None of us were doing treatment. We were grappling with it using art and creative writing.
We decided to take it on the road, so to speak. We've been able to meet so many men and women who've shared their infertility stories with us often through visual artwork or through oral history narratives. And then COVID happened. And we were like, well, we can't do public exhibitions of this anymore. So we decided to archive a lot of the pieces that we have and turn it into this wonderful anthology.
When did you realize the power or potential of art for processing this identity?
It was when we first started some of our pop-up exhibitions. Just watching people engage with it, especially the people who had no personal experience with infertility. They were really able to work with the content in a way that didn’t shut them down immediately. Sometimes, when you open up — especially someone who’s going through a really hard journey — you tell your story like, “I just had my third failed IVF.” When you try to say that to someone who maybe doesn’t have that same experience, they often — and rightfully so — just don’t know what to say or how to engage. But art becomes such a meaningful tool where people can see the emotion of it.
Part of the book’s mission is to rewrite dominant narratives around infertility. Can you talk about the more expansive view that you’re trying to take and where that leads you?
We really wanted Infertilities as a plural, to represent all of the ways in which you can come to an infertility diagnosis. And really to counter this myth that this is a white woman, heterosexual disease. That’s simply not the case. Right before this went to press, the World Health Organization revised their definition and their statistics of infertility. It used to be that one in eight couples had an infertility diagnosis. They changed it to one in six. That’s to be more expansive of not just heterosexual couples, but same-sex [couples] who want to have their own family, and the LGBTQ+ community who needs fertility treatment if they want to have some sort of biologically connected child.
We’re also challenging notions of success. Infertility doesn’t always end up with a take-home baby. That can be a hard reality for a patient to swallow. But also a hard reality for a loved one, a hopeful grandma, to swallow. Often, you have to revise what you’re doing. You might say, “I was never going to consider using a donor embryo to have my child.” But along the way, donor embryo becomes the only option. So what does it mean to carry a child that isn’t genetically related? We try to offer more expansive definitions of what success looks like, that are really rooted in the realities that we’ve heard from so many of the patients who contributed their stories.
There's this note at the beginning about how we need to grapple with infertility in a post-Roe world. Obviously, in the past year, abortions, for the most part, have been banned until very recently. Can you talk about the place that infertility has in that landscape?
I come at this from two different ways. One, if you understand reproductive justice, or what it means to believe in equal access for reproductive care — I often cite Sister Song's definition of reproductive justice, which is the right to have a child. Which includes, then, infertility, to not have a child, right? Which would include access to abortion care. And then also just the right to raise a child in a safe and sustainable community. If we understand it that way, then infertility does qualify as a reproductive justice issue. We just simply often think of it from a larger narrative of access to abortion care.
But at the same time, if you are having an infertility diagnosis, you may have also had repeated miscarriages or may have trouble having and maintaining a pregnancy. Because of that, you might be at more risk and need access to a D and C or other sorts of abortion-related services.
If you're living in a state like Wisconsin, where there are more restrictions around what it means to access any sort of abortion-related services, it may actually cause [a] pause in your decision to move forward with any sort of IVF or alternative family building plans. [Because] you're going to be at a higher risk of potentially losing that pregnancy, and then also the potential risks that might have on the woman's life who'd be carrying that pregnancy as well.
There's this idea that there aren't often neat endings in an infertility journey. Can you say more about what that means and looks like for people?
Infertility is an identity that never goes away. It doesn't disappear. It's constantly lurking in the background in terms of one's identity. I think that's something that a lot of people who don't go through it don't necessarily understand. They think, for instance, if you have a child, it's resolved.
I found that in my own experience. I adopted my child, and many people think, “You did it, you're now a parent.” And yes, that's the case. But I still am confronted with well-meaning questions about whether your daughter has a sibling. Or very well-meaning people, when I take her to the grocery store. My daughter has very, very blonde hair, and does not look like me. And [they say], “Who does she get her blonde hair from? My gosh, it's beautiful blonde hair.”
That's just from my experience. But there are a lot of other individuals who had their own infertility experiences and journeys that are also trying to navigate and talk about what it means. Let's say they didn't have success and they decided to live child-free. It’s just something that constantly lives with someone. It can be really isolating at different moments depending upon where you are with that journey.
Novotny will be reading from "Infertilities" on Friday, Nov. 3 at 7 p.m. at the North Shore Wellness Collective in Whitefish Bay, in partnership with Boswell Book Company.
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