Today, we are running the second part of our series “Experiencing Infertility as a Person of Color” created by our Michigan State University intern, Juliette. As a woman of color herself, this is a topic deeply personal and of interest to her as she collaborates with our organization to bring awareness to all experiences of infertility. Below is an overview of her interview with Madge, who has been a prior participant in the project.

Juliette, presenting her research on women of color and their experiences with infertility at Michigan State.

The second interview I conducted as part of my effort to unearth the reality of being a woman of color in the world of infertility took place with Madge Harris-Rowland. Madge is a black woman who currently teaches in Jacksonville, Florida; Madge received her infertility diagnosis in October 2013, a time in her life when she was living in Grand Rapids, Michigan and didn’t have health insurance. As someone who is young, broke, and quickly running out of time to still be on my parents’ insurance, this fact resonated with me.

What I’ve learned about infertility treatment up to this point is that it’s a numbers game; it poses a real financial constraint on the people it affects and adds one more layer of hardship to an already difficult diagnosis. Medical treatment isn’t cheap, yet we live in a country where affordable healthcare isn’t an option for a lot of communities of color and younger people. I liked talking to Madge because she was realistic about how money, and lack thereof, can limit what someone’s response to this disease is. As a woman of color without insurance, Madge consistently felt invalidated by medical personnel and clinics who didn’t offer her the same level of care as women she knew who had insurance. She often had to ask herself if this poor treatment was coming because of her identity as a black woman living in a predominately white area, or if it was because of her socioeconomic level and lack of insurance.

Madge

Madge’s testimony was the first from a black woman that I’d heard. She spoke about the issue of her blackness in a medical world sparse with representation, one that traditionally prioritizes the bodies of white women. As Madge says of infertility within her community, “There are less options and it is less talked about. There are these myths that we’re told about how [black women] can pop kids out. Infertility is not a big deal in African American communities.” The lack of representation for Madge didn’t end in Grand Rapids; it followed her to Jacksonville where as many other women were forced to do, Madge had to turn to an online platform to find support when no physical space existed for women of color.

I had gotten to know a little about Madge’s financial struggle, but I also wanted to know how her identity as a black woman affected her journey with IF. I wanted to know what infertility was to Madge before and after her diagnosis.

She told me, “I knew about it, I knew of it, but the things you see in the media and talking to other people… it was nobody that looked like me. There’s no one you can sit there and relate to because we don’t talk about it, we don’t show that side of our community. People think infertility is not a medical disease. You feel isolated because there’s no one that looks like you. I’m a teacher; I know what happens if you don’t have someone that looks like you in a positive light. There needs to be some type of research on how this affects women and men of color because there are so many stereotypes out there that are still seen as truth.”

Madge on her wedding day.

After talking to Madge, I had a lot to think about when it came to my own identity. I grew up with ideas about how the world worked, how my body would work within that world, and thought I was all but guaranteed to have a child if I chose to do so. I didn’t know that there are no guarantees, or what the price tag on medical treatments is if my body can’t naturally conceive. I didn’t know it could cost upwards of $30,000 just to adopt in certain states like Florida, or that creating your own support group is more common than resources being readily available. I’m glad I’ve been able to learn these truths about infertility, but I would like to see them change. Talking to Madge, I got a better look at what the reality and limited options there are for people like me, who in this stage of life, can’t afford to be infertile. I hope that in the future there is easier access to affordable care, that support groups are the norm and silence the rare exception. I hope that infertility is a conversation that happens with more frequency so that all communities affected by it can be supported financially and emotionally.

This is the first year, The ART of Infertility will not be at Advocacy Day (which is today)! However, despite our absence, it does not mean our advocacy efforts are mute. Here are 5 easy ways to advocate for infertility and family-building rights.

Maria and Elizabeth at Advocacy Day in 2016 at the Capital.

1. Call Your Congressional Representatives about National Issues Impacting Family-Building. Here is a list that RESOLVE: The National Infertility Association will be tracking.  You can also utilize their easy 3-step instructional with a script to assist you.
2. Get To Know Your Local/State Bills That Impact Family-Building. Here is a list for you to consult.
3. Get to Know How Your Employer Supports Alternative Family-Building. You can request insurance coverage and improve access to care from your employer by downloading and filling out this letter. 
4. Ask Your OB/GYN, Reproductive Endocrinologist, and Urologist to Get Involved on Issues 1-3. Share with your care provider more information on all the issues that impact family-build!
5. Use Your Voice and Tell Your Story to Your Reps, Family, and Friends. Remember, you are not alone! 1 in 8 couples struggle with building their family around the U.S. If you are interested in sharing your story, you can do that with us here.

Join us in pledging to take these 5 actions throughout this coming year, until we meet again at Advocacy Day 2019!

When I started working with The ART of Infertility organization, I knew very little about infertility and even less about how it affected women of color. As a black woman I wanted to change this, confront my own ignorance and attempt to represent the voice of marginalized women within a marginalized topic. But I wasn’t exactly sure how. When I read stories from occasional anthologies or on my Facebook newsfeed (no doubt due to algorithms hard at work in my Google searches about infertility), I repeatedly found that the people described were white women or white couples who were pursuing medical treatment options.

ART of Infertility intern, Juliette.

While I strongly agree with Audre Lorde in her claim that “there is no hierarchy of oppression,” I firmly believe that representation will always matter. Infertility affects people of color and our storytelling should create a space to expose and discuss these stories. Where was the discussion and aid for people who looked like me? For people who couldn’t afford medical treatment options or had no community to fall back on for support? Where were the women of color in the narrative of infertility, and what were their stories?

My questions began to get answered the day I got a call from Elizabeth, who wanted to see if I would be interested in conducting an interview with the amazing Annie Kuo, an Asian American woman who resides in Seattle, Washington. I jumped at the opportunity.

Annie is a mother to a six-and-a-half-year-old daughter, an activist that trains RESOLVE advocates to rally for family-building legislation on Capitol Hill, and a great source of information on the different options for women dealing with infertility. She’s hosted a RESOLVE support group for three years and done research on third party reproduction, adoption, foster care, and egg freezing.  

The following is a brief excerpt from a conversation I had with Annie focusing on how race affected her journey in the world of infertility. – Juliette

Juliette: As a woman of color, have you been able to get the quality of care you deserve? Have you ever felt like you’ve been denied certain things because of your ethnic identity?

Annie:  I haven’t personally noticed any difference in the level of care. But I am American who is the child of immigrants. I speak fluent English and live in a very progressive major city on the West Coast. I do know, however, that cultural factors impact people of color in terms of infertility awareness and the right time to consult medical personnel. For example, Asian Americans are less likely to seek medical advice within two years [of not conceiving] which wastes precious time. Due to the denial of their situation or distrust of a medical professional, they often will consult a friend or family member instead. If my Asian American sisters who are suffering silently can feel a closer identification with me when I speak about infertility, that’s worth speaking up for. One reason I’ve been so willing to tell my story is because I feel like it helps remove some of this social shame around something that affects a lot of people.

Annie Kuo, an ambassador and family-building advocate with RESOLVE: The National Infertility Association.

I’ve heard women of color in support groups talk about fertility stereotypes that weigh upon them, the expectation they face if they don’t have their desired family size, the shame that they feel. There’s a cultural stereotype of Latino and African Americans that they’re very fertile people, so there’s an extra stigma (and lack of community understanding) within certain communities of color about infertility. A lot of what we’re doing is a movement; it’s a movement to remove some of that shame and stigma.  

When we’re out there on Advocacy Day to help Americans struggling to build their family, that’s fighting for everybody. For the people who have money to afford IVF, or at least take out loans to do it, but also for the people with infertility across the socioeconomic spectrum who pursue family-building options through means that cost less money—like foster care.

According to the National Institutes of Health, infertility affects 1 in 6 people. It’s an equal opportunity disease. It doesn’t care what race, color, or class someone is. It strikes people at random. The lower income folks, which let’s face it, do include people of color, struggle to build their families too. They can’t always afford IVF… a lot of times they can’t. These are the ones we fight for on family-building legislation around foster care, because often they will turn to foster care to expand their families. I want to get adoption tax credit refundability on Capitol Hill so people of color who are fostering to adopt have the option of adopting more than one child into their home, many of whom are siblings. There is a highly disproportionate number of foster children who have siblings.

Annie, with other Washington state advocates, at the 2016 Advocacy Day hosted by RESOLVE: The National Infertility Association.

In regards to third party reproduction, I definitely think there is an issue in finding the right match for you. It’s limited by who is in the donor pool. A couple years ago, our support group took a tour of the local sperm bank. There was an Indian American woman in our group and at the time, only one Indian sperm donor available. She wanted an Indian donor and that was her only choice at that bank.  In the Asian American community there are fewer women who are willing to donate their eggs, so there are fewer choices. Women even get recruited from Asian countries to donate their eggs because intended parents want to find the right match. When there are limited options, recruiting donors outside of North America expands the pool selection. Asian egg donors are paid higher in some places as well.

J: Do you think this lack of diversity within donor pool is because so many people don’t know the real scale of infertility in this country? Is it possibly a money factor?  Why aren’t there more in your opinion?

A: I think there’s a combination of factors, including lack of awareness about ways to help and that there is a need in general that struggles to be met. Part of it is stigma about giving up one’s own genetic material for pay. It’s almost looked down upon, like you sold out, gave up your gametes for money. It can be perceived as shameful to use it on the side of the patient and shameful to give it on the side of the donor. In India using a gamete donor is not mentioned. Often, donor recipients don’t even tell their relatives. Honestly, I think some of the gamete providers, I’m talking sperm and egg banks, they’re also not proactively going after donors of color. They’re not prioritizing this… I don’t know, maybe it’s some tall WASP’y guy making the decisions and they don’t have the frame of reference to get that this is an issue.

J: Do you think that art has a healing capability and a place in this conversation about infertility? Can it be used to represent a marginalized community and bring them into this conversation?

A: I think art is a wonderful way for expression and public consumption. A lot of people can see through creative forms like film, artifacts, and visual art what they are feeling inside. Art and emotion, I feel, are cosmically linked. There’s something spiritual about it. Something that can express what other forms don’t have the power to. I would encourage more people of color to get involved with having a creative outlet for what they are experiencing or suffering, whether that is journaling or creating a vision board or taking brush to canvas. Art, film, and writing are often healing ways to create when we may be limited in our creation of life, speaking reproductively. I think it’s a wonderful outlet to have and I think more people should consider pursuing art as an outlet. Not only to raise awareness and contribute to an exhibit, but to heal.  

Annie, with Maria and Elizabeth at The ART of Infertility Exhibit Opening in Seattle in April 2017.

To read more about Annie’s story, she shares her perspective on living with infertility as an Asian American in the following articles:

• NBC Asian America 
• International Examiner Q&A (mentions ART of IF)
• NIAW Byline in International Examiner – Infertility awareness is a critical need among Asians

My conversation with Annie gave me a glimpse at a different side of infertility, one where the women not only battle their bodies but must also combat communal stigma, lack of donor options, and lack of representation. I think my biggest take away, one that I find myself coming to fairly often in my research on infertility, is that these things need to be talked about with more frequency. Annie’s insight, candor, and willingness to share her story to help other women of color dealing with IF so they don’t have to face what they’re going through alone is not only inspiring, it’s necessary. And it needs to happen more.   

Next week, we will feature Madge’s story and experience of navigating infertility as a black woman. Look for it soon!

May 13^th is Mother’s Day. In my family, it is also our Mom’s birthday. Last week was a string of texts between my sisters and I discussion how we were going to celebrate my mom’s birthday this year. Realizing that my Mom’s birthday fell simultaneously on Mother’s Day, the question of how we were going to celebrate both events emerged. These conversations made me think about the awkwardness of navigating “celebrating your mom” while also being sensitive and respectful of those in your family without kids.

Maria with her four sisters on a family vacation to Wyoming.

Ever since I was diagnosed with infertility 7 years ago, this feeling of awkwardness has grown. It’s hard to show up at the combo “Mother’s Day and Mom’s Birthday” party and greet everyone with a smile and say “Happy Mother’s Day”. But I do. Mainly because this day isn’t about me — it’s about my mom. I do this also because I come from a big family – 4 sisters and 1 brother. For my sisters, Mother’s Day is still a big deal. It is something they enjoy celebrating with my mom. They also know, though, that Mother’s Day is a difficult day for me. Given that, this year for an ART of Infertility Mother’s Day blog post, I asked a two of my sisters to reflect on what Mother’s Day means to them now as they navigate how to celebrate my mom while also being sensitive to me and my infertility. – Maria

Reflections from Kate:

It’s Mother’s Day and even though I don’t have kids, I find myself thinking of what the day would look like if I did. Breakfast in bed, crisp white and blush roses on the kitchen table and little fingerprint cards lining the refrigerator. I imagine no cooking, no laundry and sleeping in until 7:30 am. I also think of my friends with kids and how they amaze me with their ability to juggle nursing schedules and daycare pickups while meeting deadlines at work and finishing PhDs. I think of my mom, a working mother of six kids, who tirelessly manages the needs of children ranging from thirteen to thirty one. I think of the individuals I know who froze their eggs due to the onset of cancer treatments. I think of the mothers who have lost children and the children who have lost their mothers. I think of my friends who suffered miscarriages and struggled to get pregnant.  And I think of my sister Maria, whose personal experience with infertility has transformed my impression of motherhood.

Maria, with her sisters and mom at Kate’s wedding.

Maria and I are fourteen months apart. If you do the math, that means that my mom was pregnant with me when Maria was just 5 months old. This made us inherently close as siblings, but distinctly unique in personalities. Nonetheless, I remember wanting to be just like Maria as a kid and begged my mom to let me go to preschool when Maria started kindergarten. I also remember Maria telling me what to do as a kid, and me being happily compliant. She enlisted me to paint the kitchen in red finger paint while my mom was violently ill with the flu, she convinced me to play the “ugly” Barbie when we played dolls, and she insisted that I “be her assistant” whenever we ran our imaginary McKay’s Bar and Cafe.

As much as I wanted to be just like my sister, I could never compete with Maria’s clear ambition and punctual nature. Maria always had timeliness in her deliverables and a goal driven mentality to her thoughts. In high school, she ran the neighborhood carpool and if you weren’t in the car at exactly at 3:15 pm, she would leave school without you.  At home, she completed all of her homework from 3:45 pm – 4:30 pm in order to make her closing shift at the local hardware store. In college, Maria was the only person I knew who worked from 9 am – 5 pm in the library so that she could cook, watch tv, and relax at night.

So when I found out that Maria and her husband Kevin had been trying to get pregnant for over a year without success, I was surprised. I imagined Maria applied the same punctuality and determination to getting pregnant as she had throughout other areas of her life. But as the years passed, the objective of becoming a mother and having a child was confronted with the diagnosis of infertility.

We as sisters rarely talk about Maria’s experience with infertility, but this Fall it came into focus while we were together in Philadelphia. Maria suggested that my sisters and mom come see the ART of Infertility exhibit she had curated and celebrate my 30th birthday. Over lunch and plates of dumplings and dim sum, my sister threw out a question none of us were ready to answer. Some may say, she has a gift of being direct.  “Do you think my infertility has influenced your decisions to have kids?” Silence.

I watched  one of my sisters choke on her pork bun as the other burnt her tongue on jasmine tea. Our eyes met in silent desperation as we waited for one of us to speak. This moment of hesitation was resolved by our own mother’s intervention. We didn’t talk much about this moment until after we returned home from the weekend. Motherhood is a personal decision and that question felt thrust upon us. Choosing when or even if we want to be mothers is not an open conversation in my family.

Growing up in an Irish-Catholic family of six, it has been an assumption and an actual vow made within the marriage ceremony to welcome children into your life. I know that for myself and my sisters we do eventually want to have children.  Maria’s loaded question called us to consider the influence of her infertility on our personal decisions. While it made all of us uncomfortable to discuss in public, I’ll do my best to honestly answer it now.

Maria’s  infertility has influenced my ability to understand the complexities in the very definition of “motherhood.” Before Maria was open about her struggle to get pregnant and the pain and stress it brought to her life and marriage, I had a very narrow framework on how I thought about motherhood. Growing up in a seemingly fertile family made it difficult to identify with the  hardships that so many women undergo to become pregnant. Yet, in witnessing  Maria’s journey  and hearing the stories of couples though the Art of Infertility, I have adjusted my assumptions around motherhood.  It has afforded me much needed sensitivity and compassion when having open conversations with friends who walk similar, difficult paths.

I can’t say that Maria’s infertility has directly influenced my decision to become a mom, but it has shaped how I think about embracing motherhood in the future. Seeing Maria apply her dedication and purpose to build a supportive community for couples struggling with infertility is inspiring. Watching her walk at MSU as a PhD candidate made the kindergarten Kate want to be in school too. Witnessing the reaction of couples at her curated art exhibit in Philadelphia made me proud of how she has channeled her creativity and inspired others to come forth with their stories.

Maria with her sister Julia, Kate, and her mom.

In light of the struggles to become a mom, Maria has continued to “mother” us as we embark upon new chapters in our lives. She’s been the support as we have moved to new cities, taken new jobs and opportunities, welcomed new brother-in-laws and said goodbye to family members who have passed. She has reminded us that motherhood is not an entitlement, but a true gift worthy of celebration. I now have a broader sensitivity to the struggles of those with infertility, those who have suffered loss as a mother, and new mothers in need of postpartum care.

Maria’s experience has also reminded me that there is no set timeline to motherhood. As my thirtieth birthday approached this year, I could almost feel my biological time clock start ticking. While my sister’s struggle with infertility presents looming questions of my own ability to have kids, I recognize that there are other ways I can be motherly within my life.

By honoring my mom, my aunts and grandmother, I celebrate the gift of life that they continue to nourish. In visiting new moms, I can help tend to postpartum needs. In listening to a friend after her most recent miscarriage or encouraging a mom-to-be with an unexpected pregnancy, I can lend my comfort and support.

As I begin embrace the idea of becoming a mom, I know that I will need Maria’s recognition and support. I also acknowledge that our dialogue around motherhood will shift if I do become pregnant. That’s why it was so hard to give Maria a concrete answer when she asked us about the influence of her infertility this Fall. Her inability to become pregnant has not adjusted my desire to become a mom, but it has required me to deconstruct my concept of motherhood and embrace a framework that is much more inclusive, honest and forthcoming about the challenges of fertility. Maria has forced me to conceive of motherhood on new terms and in a new spectrum. And if I’m lucky to celebrate Mother’s Day with my own kids, I can only hope that Maria will be there to help mother me through all the pains and celebrations that come along with it.

Reflections from Martha:

Mother’s Day is here again. Although I am not a parent myself, this holiday is one of great significance to my family members and me. Not only is it a time to appreciate those women who are closest to us, but also a time to be reflective and humble in the midst of those who face infertility.

Maria’s mom and Martha viewing an ART of Infertility exhibit.

I can recall spending Mother’s Day as a girl surrounded by friends and family. This day usually aligns with my mother’s birthday, so we would frequently host many individuals that day and celebrate Mom, aunties, grandmothers, etc.

When Maria got married, people frequently asked her “…so when are you going to have a baby?” As a newlywed, she would shrug and smile, assuring them it would be soon. As months turned to years, that optimism faded and Maria changed her tune. The smile and assurance switched to an uncomfortable laugh and the answer, “I don’t know.” Soon, we learned that she and Kevin were struggling with infertility.

As an outsider to their relationship, I do not understand all that they have gone through. I’ll admit that to this day, I still do not fully understand. I have never walked a mile in their shoes. I don’t know the words spoken behind closed doors. I don’t know the feelings of loss for something you’ve never held. I don’t know their sadness. I don’t know their pain. But, I do know it is valid. Their pain is real.

One of the greatest things I struggle with as being a sister to someone who has been diagnosed as infertile is learning how to comfort her. It is challenging to gauge if I am being supportive in an effective manner. Every Mother’s Day and Father’s Day, I envision myself in Maria and Kevin’s shoes. I wonder what it must feel like to experience an inescapable sense of stimuli centered around fertility. Whether you’re walking through the grocery store or scrolling through your phone, those days are filled with moments of joyful expression from mothers and fathers everywhere. There’s no place to hide: no way to retreat. As her sister, all I can do is reach out. I send a text or give a call, expressing my love for them and sharing with them that I’m thinking of them that day.

Infertility can cause people to close their doors to the outside world and shut themselves off from loved ones who don’t understand the pain, but we need to understand. As a family member, I’m requesting two things: patience and education. Give me what I need to know to be there for you. There’s no manual that comes with this position. At times, I live in fear of putting my foot in my mouth.

I cannot relate to feeling branded “infertile” on Mother’s Day. It must be gut wrenching to look around you and feel teased, taunted, and angered by what others have that you continue to lack. To see something you’ve wanted for so long and something you treasure so deeply and yet, it’s the one thing that you cannot control. That frustration and sense of exclusion on that day must feel awful.

In light of my sister’s infertility, I still choose to celebrate Mother’s Day by taking a moment to honor the women I love. I see it as a holiday that offers a platform for thanking the all the women (not just biological mothers) who have given themselves to me unconditionally. After all, that’s what motherhood is: an act of undying, devotional love. It is a day to be inspired by those who have come before me and appreciate those who walk alongside me.

I’m proud that Maria continues to transform her mourning into an outlet of creativity that inspires others. My hope is that on Mother’s Day we all take a second recognize the strength of the women in our lives and stand in solidarity throughout the journey, not only as mothers, but also as sisters, granddaughters, and friends.