Experiencing Infertility as a Person of Color: A Black Woman’s Perspective

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.

Experiencing Infertility as a Woman of Color: An Asian American Perspective

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:


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!