Fertility language, culture, & inclusivity

Show notes‍

Carrot’s fertility language guide is a robust resource for learning how to communicate about fertility in an inclusive and accurate way.

The International Glossary on Infertility and Fertility Care is an additional resource Dr. Vanderpoel recommends for learning about fertility language. 

If you're a Carrot member and want to learn more about fertility, check out our Read & learn library in your account.

Transcript

Marie (00:00): If you've been listening to the other episodes of this podcast, you may have noticed some of the deliberate choices we've made regarding language. For instance, we tend to say gestational carrier rather than surrogate and today we're going to talk a little more about the words we use and why the language of fertility is so important. This is the final episode of the season and it's going to be a little different from our previous episodes. Normally we feature personal stories from people who have gone through their own fertility journeys, but today I'm going to talk to some folks from Carrot, the leading global fertility benefits provider for employers. I'm spinning the microphone around on them and I'm excited to hear what they have to say about their global perspective on fertility language.

Marie (00:54): This is Baby Steps, a podcast from Carrot Fertility about the many diverse paths that people take in the pursuit of parenthood. I'm your host, Marie McCoy-Thompson.

Marie (01:07): I am here with Dr. Sheryl Vanderpoel, and Dr. Vanderpoel was a scientist and a medical officer at the World Health Organization. She's since retired from the WHO, but has become an invaluable external and independent scientific advisor for Carrot. So thank you Sheryl for being here. And we're also here with Riley Steinmetz who is the head of Carrot's global content. Good morning Riley.

Riley (01:35): Good morning Marie. I'm excited to be here.

Marie (01:38): So Dr. Vanderpoel, you are the person responsible for having brought together a global team at the WHO in 2008. I know you helped redefine the terms that address fertility care and infertility, because infertility was defined as a disease, but it was not until 2017 that the American Medical Association decided to officially change that definition to align with the WHO. So that's a long winded way to get to this question of why do you think it can take so long to make these kinds of changes?

Sheryl (02:16): Thank you so much for asking this question first because I would like to make it clear that this definition that defines infertility as a disease was one that wasn't reached just by me, and all the terminologies that I'm really hoping we can get to in this podcast were not my decisions alone. And as you mentioned, there were hundreds actually of experts from all around the globe from low and middle income countries, developing countries. There were lay people there. Now this definition of infertility as a disease that you mentioned, it actually wasn't easy to come to in 2008. For example, there were some countries and their representatives who came to the meetings and they said that an inability for a couple to become pregnant was a condition. Other countries said no, it's a malfunction. So as you mentioned, the AMA or the American Medical Association, they had a meeting in 2017 and they finally did adopt and support WHO's designation, WHO as in the World Health Organization, designation of infertility.

Sheryl (03:22): And then went on to say that infertility as a disease state with multiple etiologies really requires a range of interventions, advanced fertility treatment and prevention, which was amazing. I mean they just threw everything in there, making you realize how important infertility was and they really did elevate the position and that condition, as it was called before, or per se a disability, to a level of a disease. Now, exactly why did it take as long as eight to nine years to alter a definition? Well, just as during the consultations in 2008, topics of infertility and reproduction do need to engage, and consider, and debate, and conversations that link to ethics, cultural issues, moral issues, as well as sexual and human rights issues. So it's not so straight forward.

Riley (04:21): It's really cool to hear your experience going through all of this and how all of these become reality with the gap in time from 2008 to 2017, obviously there's a ton of things changing in the assisted reproductive technology world. So is the definition of infertility something, to me it feels like something that we should constantly be revisiting, but is that... What is your perspective on that?

Sheryl (04:46): I think infertility and how infertility is defined and used can vary and differ. I have a very global perspective, so even though it's defined, for example, as a disease state, it's also linked to time. So how long does it take to become pregnant, a time to pregnancy. And so in some places in the world they talk about it takes you a year, if you try for a year and you cannot become pregnant, you can be defined as infertile, but there are other countries, also even in Europe, who will say, no, you need to try for at least two years. So it's a definition that is defined not only by how treatments have advanced, but also how people visualize it.

Marie (05:34): It definitely takes time for these things to evolve, but a broader question, why should we care? Why is language and the way that we describe interventions and treatment so important in conversations about fertility care and infertility?

Sheryl (05:53): Well, from my perspective, appropriate use of medical language obviously can definitely dictate access and points of care, and ensure that everybody knows what is actually being meant by what they say. Let me give you an example. So a consensus, again, not me, was reached to avoid the use of the term conception. Now, why is that? If somebody writes or says her ability to conceive, conception has taken place, what do these statements really mean? Some will say, well that's when life begins and that's at fertilization. And others will say, and there is even a human rights court case judgment that declared that, conception is when the embryo implants in the woman. So you get all excited when you see that, but what they really mean is that they will help you to become pregnant. That does not mean they're going to be able to help manage your obstetric care or what happens during your pregnancy.

Sheryl (06:59): They're not going to help you avoid a miscarriage or a preterm birth. However, what if somebody else writes, we will help you to conceive a healthy child. Now, that means that a woman will become pregnant, they will help that woman to become pregnant. And again, this is from the woman's perspective, maintain that pregnancy and deliver a healthy baby. So that's why that word conceive really doesn't work within the space because it doesn't make sense to everyone. It doesn't mean the same thing to everyone, especially if it's an embryo that someone needs and it's not that their partner becomes pregnant. So therefore we're encouraging people to say what they mean. So instead of using conception, there was a consensus, again, amongst all these people, experts, lay people, people living with infertility, that efforts should be made to use scientifically recognized definitions like fertilization, implantation, pregnancy, live birth.

Riley (08:05): Yeah. I think in that example, clearly there, I think a lot of times the language that we see people using tries to simplify the process that people go through in the pursuit of parenthood. And biologically it's not a one plus one equals two sort of situation. It's much more complicated, and I think in order for us to actually understand and have a better understanding of the very many stages people go through to become parents, we need to actually use the language that describes the step they're going through, and describes the issue that they're dealing with so that we can understand how we can better intervene and lead to higher success rates.

Sheryl (09:01): Exactly, and support. So if you have a same sex lesbian couple and you have a woman who's able to very successfully produce beautiful oocytes, often colloquially called eggs, that is an amazing success for her, if that's her contribution to that process. So again, I think... Yeah, thank you so much. I really think that more positive language and better understanding of where we're at and what we're doing in this field of infertility, and reproduction, and becoming parents is really important.

Riley (09:37): Yeah. And one other thing I did want to mention about the language that we use at Carrot. As society has evolved and assisted reproductive technology has advanced, it often feels like... Well and also as the definition of a parent kind of evolves over time. I think that the language that we use to describe fertility care has lagged behind other aspects of society and assisted reproductive technology. So I know we're very deliberate about avoiding terms, you hear intrauterine insemination sometimes referred to as artificial insemination, and calling that procedure artificial has other stigmas and feels less inclusive. So when you use the actual proper or procedural term that's inclusive of anyone using that procedure. It's not making some sort of value judgment as to whether something is an artificial way of becoming a parent or not.

Riley (10:46): I've also seen in a lot of a lot of pamphlets and things like that, people refer to some relationship as nontraditional or something like that. I think it's really important when you're looking at, again all the different ways people pursue parenthood, I think it's really important to be inclusive of all of those different roads, and all the different forms a relationship can have, and even being cognizant of the fact that becoming a parent doesn't require any sort of romantic relationship. There's lots of people out there who are going through these processes on their own and there's nothing nontraditional about that. It's just the way that they are pursuing their dream of becoming a parent.

Sheryl (11:28): Exactly. There was a global consultation, a woman living with infertility asked, why do people and experts say words like artificial insemination? What is artificial? "My husband's paralyzed," is what she said, "from the waist down and I need to use his sperm that they're able to collect for insemination. And why is this considered artificial for me," is what she said. I think your point is really well taken that these words we use can be hurtful. They can have unintended consequences. I must say as the global advisor for Carrot, I've been really impressed with how Carrot really tries hard to work through this language and use appropriate language to make sure that stigma and that other issues don't cause any of the people who require access to feel in any way disadvantaged, whether it's through fertility care, adoption, or a gestational carrier.

Riley (12:31): Yeah and I think one of the things working at Carrot we get to work with a lot of HR and benefits leaders working at some of the most forward thinking companies in the world. And I think it's really cool to be able... I know that from my conversations with a lot of our HR and benefits contacts, they care so much about their employees and they care so much about... They want to understand the processes their employees are going through. And I think that's one of the really cool things is they've expressed an interest in making sure they're using the right inclusive language and it's really exciting to be their partner in that to make sure that when our friends and contacts in HR are going out and having those conversations that can be really emotional and difficult to have, they're using the language that's going to make their employees feel cared for and understood.

Marie (13:32): These are all great examples. And just to dig into one more example, Carrot typically uses the phrase gestational carrier instead of saying surrogate, although in our episode on this topic, both terms do come up, but can you explain the difference between those two terms and why gestational carrier is preferred?

Sheryl (13:54): Yeah, this is kind of an interest. I love this topic. This is a very interesting topic. So this term sex surrogate, was often used, as sex was required and the woman provided her oocytes, or more colloquial known as eggs, and she would become pregnant and deliver the child. And now we have modern techniques like intrauterine insemination, which you mentioned. So therefore, sometimes despite that these interventions replaced sex, this process was sometimes and is still referred to as sex surrogate. Things are moving forward. Yes, things are moving forward. It's only been 40 some years. We have IVF and we can use donor gametes, sperm and oocytes, eggs, and the technologies have become more common and a woman did not need to be the provider of her own eggs or oocytes. And this woman then became known as the gestational surrogate. And sex surrogate can be used appropriately or inappropriately in other areas of sexual health, even IT, and surrogate can refer to one or more or a replacement for other aspects of human life.

Sheryl (15:07): So surrogate is actually not an appropriate word to really use anymore. And we really want to avoid discrimination, stigmatization, a slip of going back of calling it a sex surrogate, or traditional. And so a consensus, and again wasn't me, a consensus of all of these people, including people who were gestational carriers, all agreed that we really need to be using a more friendly term such as gestational carrier, and a more reasonable, realizable term. And that a gestational carrier of a non genetically related fetus, so in other words, somebody who puts an embryo in, that's what that person is, or a gestational carrier who uses her own eggs or oocytes. So it makes it so that again, it's more medical and we get away from the whole social cultural issues of who's defined as the mother, the status of the child who's born, who are the parents. So really it was a... I know I gave part of a little bit of a history lesson, but that's how it evolved.

Riley (16:18): Yeah, Sheryl, I think it goes back to what you were saying earlier about how we want to make sure we're using language that actually talks about the stage or the process that's going on. So if you look at the phrase gestational carrier, it is describing exactly what is going on here. The woman who is carrying this embryo, whether it's genetically related to her or not, she's gestating and carrying this pregnancy. So I think one of the things that is really important in the language we use, like you've said time and time again, is that we are using accurate phrases to describe what all of the different parts of this process are doing or people are doing in these stages.

Marie (17:10): So we've talked about a lot of these terms, and their importance, and why accuracy is so crucial in this whole process, but what advice do you have for those who are committed to using more inclusive and medically accurate language when talking about fertility, but may not know where to start, are there resources you could recommend?

Sheryl (17:34): A good place to start is the, it's called the International Glossary on Infertility and Fertility Care and it came out in 2017. It'll probably get updated with time, but it's great. It's the beauty of the glossary. Again, it's consensus based, it's evidence-based, and it really harmonizes the communication between health professionals, scientists, laypersons, patients, policymakers, journalists. It's really a great resource. Carrot has taken it to a new level because they've taken on the advice of experts and generated a language guide, and it provides more real word world examples. So it's not just a glossary of terms, but it actually says how to use these terms and situations, that people will encounter HR consultants will encounter, journalists will encounter, and what would be the best way in which to ask a question, respond to a question.

Marie (18:36): Those are both great resources and I will link both of them in the show notes on our website. For anyone listening who wants to check them out, and I also know Carrot is updating that language guide. Can you provide some thoughts on some of the key topics or changes that you're advising Carrot to consider?

Sheryl (18:56): I think Carrot is doing such a great job. I think my advice is that more real world examples on best practice and indeed I think stories are the best way to learn, and they're fascinating. I think the advice for change of language that I've seen with the first edition of the language guide has been really on point and very helpful.

Riley (19:18): Yeah, and I know that the language guide, Sheryl, you and I worked together on creating the first version, and as we've discussed many times in this podcast that the reproductive technology space is constantly evolving. Our society is constantly evolving. So I think it's really critical for us to make sure we're constantly turning an eye to the language we're using and ensuring that we're staying inclusive and staying accurate in everything we're putting out in the world. And I also think, again, Sheryl, you and I have talked about this multiple times, even though at Carrot we're being very deliberate about making sure we're using the right language, we're also humans and we have our moments where we may use the wrong word as well. And I think it's also really important for us when we're talking to other people in this space to acknowledge that it's okay, that we're all learning, and we're trying to do the best we can, but when something is changing as quickly as the fertility space is... We're trying our best to stay on top of it, but all of us are allowed to mess up on occasion.

Riley (20:30): And for people listening, I think it's important to know you don't have to always have the right word, you won't always have the right word, and it's okay to laugh at it. It's okay to ask someone how they feel about it. I think it's important for us to realize we're all learning and growing together as this space changes. And that's why we're going to constantly be updating the language guide, because we want to make sure we're reflecting those things that we're learning in all of our conversations with our members, with our friends, with our loved ones, we want to make sure we're sharing all of the knowledge that we're gathering with everyone who wants to go on this journey with us.

Sheryl (21:11): I couldn't agree more. And thank you again for inviting me to talk on this podcast and also for allowing me to be an advisor and help Carrot work through a lot of these huge issues. As we started with our first question, it took eight to nine years in some countries to change a definition. So yeah, baby steps, things take time.

Marie (21:37): Yes, absolutely, and as Riley mentioned, we're still all trying to learn and grow as we move on. And even on this very podcast series, we definitely don't use the exact correct term every time, try it as I might, but it's definitely a process. And so I really appreciate both of you being here today and I learn so much every time I talk to you. So thank you so much for sharing all of your wisdom and guidance.

Sheryl (22:06): Thank you for having me.

Riley (22:08): Thanks for having us, Marie. It was fun.

Marie (22:18): Baby Steps is a podcast from Carrot, the leading global fertility benefits provider for employers. To demonstrate how Carrot helps its members, I'm sitting down with Adam, the head of Carrot's care navigation. Hi Adam.

Adam (22:32): Hi there.

Marie (22:33): I'm going to read a question that Adam has received from a Carrot member and Adam is going to walk through how he would help that person. Here's the question from the Carrot member. My question is actually around known donor agreements. My partner and I are using a known donor and need to consult with a family lawyer for our known donor agreement. Is that something Carrot can help with?

Adam (22:54): Yeah, definitely. Donor agreements and any legal fees through an eligible lawyer are covered expenses through the Carrot benefit. For this member, we'd ask them if they're working with a lawyer. If so, we ask them to provide their name just so we can verify their eligibility before they begin to work on a donor agreement. If the member isn't working with a lawyer, we're happy to provide them with a list of eligible lawyers in their area that they can work with on a donor agreement.

Marie (23:22): Awesome. Thanks, Adam. If you'd like to learn more, you can go to Carrotfertility.com

Marie (23:35): Baby Steps is produced and edited by me, Marie McCoy-Thompson, and also edited and mixed by Jim Metzendorf, the king of meeting every tight deadline. Our original music is by Chris Ploeg and Chili Corder. Someone recently asked me if that was a band name and I would like to clarify that those are, in fact, they're real incredible names. And our artwork is by Allie Packard, who like everyone else I've just named, has been a dream to work with throughout the season. This has been an All Turtles production. Thanks for listening.