Episode 6: Joyal Mulheron
“I began to realize that the issue and the experience of bereavement has systemic injustices inherent within it, and that it was a policy and data gap that the United States was overlooking.”
Joyal Mulheron
An Activist for the Bereaved
Joyal Mulheron never set out to become an activist for the bereaved. A trained scientist, her expertise was in public policy, working as the chief strategy officer for Michelle Obama's Partnership for a Healthier America. But all that changed in 2013, when she left her role following the death of her terminally ill infant daughter, Eleanora.
Joyal's grief led her to the streets of Washington, D.C., where she embarked on a deeply personal journey, going door to door to speak with people who'd also experienced tragic deaths. As families from all backgrounds revealed their silent struggles, Joyal noted the systemic injustices that impact families navigating loss, and how people are coping in isolation. In response, Joyal founded Evermore, a nonpartisan nonprofit dedicated to improving the lives of bereaved children and families in America.
Today, she works tirelessly to raise awareness about this public health crisis and pushes for policy changes that support social and economic outcomes for the bereaved, forging a more equitable path forward for those who have suffered loss.
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Transcript
(Edited slightly for clarity)
Melissa Ceria: Joyal Mulheron, welcome.
Joyal Mulheron: Thank you.
Melissa Ceria: Joyal, what motivated you to embark on this door-to-door journey to connect with grieving families following the loss of your daughter?
Joyal Mulheron: Well, it has been quite a journey, and I don't know that I knew I was embarking on it, at least at the beginning. It's just somewhat snowballed over time. But really, after our daughter died, as you mentioned, I went and I worked as an adviser for former First Lady Michelle Obama, and I was waking up most mornings to national tragedies. It was Trayvon Martin and Hadiya Pendleton, the Sandy Hook massacre, the hotshot firefighters, the Jasper tornadoes, the Chicago homicides. And I just felt that something else needed to exist for bereaved families beyond going to a support group or trying to find a therapist. That's when I began meeting with people in Washington, D.C., and over time, one conversation led to another, and another. And then soon I was talking to people across the nation. And that's really when I began to realize that the issue and the experience of bereavement has systemic injustices inherent within it, and that it was a policy and data gap that the United States was overlooking.
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Melissa Ceria [00:02:40] I wanted to ask you, how difficult was it for you to listen to these stories while you were in the midst of your own grief?
Joyal Mulheron [00:02:48] Oh, it was terribly difficult. The most challenging part of this work in the early days was to sit with the family, really connect and listen to their story, and feel into the emotional situation and these vulnerabilities that they were sharing with me, and then sort of turning around and having to do accounting, or talking to a lawyer. I mean, that was a very, very difficult balance for me for many years. It's something that I've been able to refine and get better at of late. But it was incredibly challenging. And even till today, I still make space for myself after sitting with families, because to sort of truly absorb their experience, that requires a lot of my bandwidth to be present in those moments.
Melissa Ceria [00:03:47] How did you establish trust with these individuals that you had never met before, so that they would share their stories with you?
Joyal Mulheron [00:03:55] You know, I just sat with families or individuals in their homes, and their churches or synagogues, or even police stations around town. And I think I earned that trust through the conversation. I was very committed to hearing their story, not judging them, and also placing a lot of value in the person that they had lost, and not questioning the value that that individual offered to them or to society. And so it's been a process and it's continual. I'm always meeting new people and hopefully earning their trust. And so that the work that we do in the organization is a trustworthy organization for all of us.
Melissa Ceria [00:04:44] Can you describe the social and emotional landscape that you observed during that time?
Joyal Mulheron [00:04:49] Sure. I mean, socially, most people feel incredibly isolated, even if their community response, or others in the community would characterize the larger ecosystem response as robust. The individual themself often felt very isolated. And I think that that's not surprising, because only one person had a relationship with the person they lost, and all the characteristics and the nuances were so specific that only they could relate to them. And so socially, almost everyone felt profoundly alone. And they also felt a lot of guilt and shame that somehow the death of their loved one, no matter what the circumstances, was in fact their fault. And they could come up with a lot of varying scenarios as to why, why this was actually their fault, and not that their person died of cancer, or not that their person was killed in an a mass event or an unpredictable homicide event, and so forth. To be present with these families and these individuals was so humbling and quite an honor, because it was really beginning to magnify their own vulnerabilities. And then they would also share how they were coping in those moments, or not coping well.
Melissa Ceria [00:06:25] And a deep sense of responsibility, it seems, from what you're describing, even though they may not have been responsible for those deaths.
Joyal Mulheron [00:06:32] Oh, absolutely. I mean, nobody wants to lose their loved one in a tragic accident or incident, and you want to be able to find some rationale on why this injustice happened. And many times, frankly, there are no reasons.
Melissa Ceria [00:06:51] You have a background in science. You have a masters in biotechnology. So what was it like for you to rely on this qualitative information, in other words, these personal accounts as part of your research?
Joyal Mulheron [00:07:04] No, that's such a brilliant question because in the beginning, I was listening to all these stories. I am very grounded in data and science, and was really yearning for quality data to substantiate what I was hearing from families. But frankly, at the time, you know, just to give people some context, this is 5 to 6 years prior to COVID, so the data on bereavement wasn't going to start emerging in a real substantial form until about 2017. And I started this work in 2014. I knew that there was a massive problem. Effectively, I knew that the house was on fire, but I didn't know how to convey to other people in data that indeed the house was on fire and it required society's attention. It was very frustrating.
Melissa Ceria [00:07:54] And that's why, presumably this issue needed to be humanized in order for you to communicate that.
Joyal Mulheron [00:08:01] Absolutely. And I think it's both the human experience and the data integrated together that people begin to understand that this is a much larger problem.
Melissa Ceria [00:08:11] So let's talk about that house on fire. You observed significant challenges that minority or marginalized communities encounter when trying to access bereavement support and resources. Can you talk about some of those specific challenges?
Joyal Mulheron [00:08:25] Well, sure. And I'll just start with it's experienced by just about everyone, although there are magnifications and exaggerations depending on wealth allocation, access to employee benefits, for example. But at the time, the solutions, and still predominantly today, people have access to two things: support groups -- and often I say if you've seen one, you've seen one. And they're very good support groups out there. That's not to say that, but there's not a lot of consistency and continuity across those different groups. And a therapist. So there are two things to know about therapy: right now that there are no practice standards for grief and bereavement therapists and social workers in the United States. So there's a high level of variability on what you would receive from a specific provider. And the second that surprises a lot of people, many families aren't ready for therapists, depending on who died and how they died. Seeking therapy sometimes won't help the individual cope for another 8 to 9 months, like there is a real resting period between the death event and when the individual would seek therapy. That being said, back to your question, there is a disproportionate burden of unexpected and tragic deaths, particularly in historically marginalized or excluded communities. So you take on top of, experience a death event unexpectedly and you compound it with, you might not have a job that allows you to seek support during the work week. You might not have bereavement leave benefits. You may also not be able to go see a therapist, because going to therapy, let alone identifying a quality therapist, but having the resources to pay for that. And then the last thing that I think is really sort of a hidden atrocity, and we know this from other data sources, is that about a third of Americans cannot absorb an expense of $400, unexpectedly. And when you have. A funeral or memorial where the average cost is $9,000, this really destabilizes families in a precipitous way. And I have come to believe, again, we're not quite there on the quantitative data, that it continues to relegate some individuals to poverty and social programs.
Melissa Ceria [00:11:03] That funeral expense.
Joyal Mulheron [00:11:05] Yes, I think the funeral industry has largely gone unchecked for decades, and their practices, through many reviews by the Federal Trade Commission and other organizations, have found that their practices are predatory, in addition to that. And so imagine, if you will, being a mother who has lost her child, or her third child, and trying to pay for these costs, you know, let alone just coping. It's sometimes insurmountable for people.
Melissa Ceria [00:11:41] So what are some of the policies you've been focusing on to reduce some of these disparities?
Joyal Mulheron [00:11:47] Well, primarily getting the federal government's attention. And so, it's a little bit of a wonky nuance, but the work started in earnest pre-COVID in January 2020. And what we were able to do then was attach a bereavement specific provision to the U.S. Budget process. The U.S. Budget is the only bill that Congress is supposed to pass. And so we have, for the last three years, had bereavement related provisions included in the U.S. Budget, which is increasing the visibility and the volume, if you will, for the federal government to pay attention to these sets of issues. I'll stop there on sort of that wonkiness. There's a lot of other very tactical things that we've been doing, and there's a lot of progress that's come with that in the last couple of years.
Melissa Ceria [00:12:37] Can you share some examples?
Joyal Mulheron [00:12:38] So, one of the things that's not quite out yet, although we'll be out soon, is the federal government has written its first report on grief and bereavement, particularly as it relates to health. And so that'll be out fairly soon. The Department of Ed's FAFSA Application now has a question specifically about orphanhood, and whether or not the matriculating student experienced the death of a parent. That's incredibly important. I'll just mention, you know, briefly here that as a nation we use to support post-secondary education for bereaved and orphaned children in the United States, we rolled that back in the 80s. And as a result of that, we saw about a 20% drop in college enrollment among these children. The FTC is beginning to look at the funeral industry and likely to reissue the funeral rule to hopefully balance the playing field for consumers. And there are a number of other things. There's a federal commission right now looking at practice standards for grief therapists and social workers. So there are just a number of things that are just beginning to get off the ground and running, so that the experience in the aftermath isn't so devastating.
Melissa Ceria [00:13:52] Those are important changes Joyal that are happening, and I know that you're at the forefront of many of those, along with your colleagues who are working with you hand in hand on this. I want to talk a little bit about bereavement leave, because this is something that's come up in policy, and many countries require employers to offer bereavement leave, but the U.S. does not. Although, some states have enacted their own family and medical leave laws. Is that correct?
Joyal Mulheron [00:14:17] That is correct.
Melissa Ceria [00:14:18] How have you been advocating for these provisions? What do you call for and what's the outcome so far?
Joyal Mulheron [00:14:25] So there are varying state provisions. There are also provisions for U.S. service members. And so as of right now, military service members can take up to two weeks of paid bereavement leave for the death of a child or spouse. There is legislation pending right now in Congress, we're urging people to call their representatives or their senators in order to ensure that service members can come home when they experience the death of a parent. We've also a couple of years ago, when Biden came into office, there was a really big push to expand paid leave, and at the time, bereavement leave was not part of the fabric of those conversations and we were successful in securing a Paid Bereavement Leave provision, in the Paid Leave work that the White House was pushing legislation called Build Back Better (Act), that ultimately failed. But really trying to expand an individual's right to take a few days off work, to be able to take them when they need them. It's not simply about coping and feeling sad. There are a lot of legal things that have to be managed you know, after someone dies, that requires time. And so we have been really promoting nonconsecutive bereavement leave benefits, and we've really looked at stratifying those based on the employer size. So, for example, a small business, if they're just able to give them, let's say five days off to just handle their affairs, I think that would be wonderful. Whereas in a larger business, straddling both paid leave and unpaid leave, so that those individuals are able to take time to, to manage their affairs.
Melissa Ceria [00:16:11] Yeah, that makes a lot of sense because people often don't begin processing their grief right away. Initially, they're often dealing with logistical tasks like arranging funerals and handling paperwork. It's just the beginning of a much larger journey.
Joyal Mulheron [00:16:26] Correct. And on top of that, we have encouraged employers to think about what we call like anchor relationships. These are relationships that have really helped anchor an identity for an individual. And now when that individual is gone, it can really destabilize the employee in some fashion. And just to have a little bit of space for that individual to be able to cope, it can be not just generous, it can be the difference between someone picking up drinking, or drug use, or risky sexual behavior. There are other associations with experiencing these events and just not having support systems around the individual.
Melissa Ceria [00:17:12] Right. So an anchor person could be an aunt, or a friend who has been hugely important in somebody's life. Employers need to start recognizing that individuals that support us in life don't necessarily come just in the form of a parent or an immediate relative. Is that hard to define though in terms of policy?
Joyal Mulheron [00:17:34] It has been, but I think we have some good language now around this that I feel at least if it's not the answer, it's certainly a step forward in the right direction.
Melissa Ceria [00:17:46] I wonder if some of this also has to do with the way we perceive our communities? We live in such a nuclear way and isolated, as you describe. Defining this more inclusive group of people in your life is potentially recognizing that we all rely on each other, that we're interwoven in ways that we need to recognize in order to offer the support that's necessary.
Joyal Mulheron [00:18:07] Absolutely. In fact, I often say there is a seminal book called Bowling Alone, and it is documenting the breakdown of American community. And I often say to policymakers, it's grieving alone that's really the problem, and in isolation, without the fabric around you to help absorb that loss, it can really be catastrophic for the individual themselves.
Melissa Ceria [00:18:33] The people that you have come to know through your work have also come to rely on you as an advocate. Tell us a little bit about those relationships, what they mean to you. And did you expect to find yourself in this role?
Joyal Mulheron [00:18:50] Absolutely not. In fact, there are still many days where I think, how the heck did I get here? And it's an enormous responsibility and it's an honor. There are people in my life now that I would have never met walking down the halls of the White House, and people who mean a great deal to me, not simply because they have given me or confided in me their vulnerabilities and some of their most painful life moments, but that they believe in me. And that they believe in the work that is happening and that it must continue. So even when I've had really tough days and think, I just can't do this anymore, I can't put one foot in front of the other, there are many people, in fact, most days it just is evergrowing who are here supporting me. And it's an enormous honor because in a post George Floyd era, where racial divides seem more intense, or perhaps we're just more aware of them now as a white individual, that people who don't look like me are really invested in this success, and that just feels like such a profound honor.
Melissa Ceria [00:20:10] You released a study, Joyal, in 2022 called America's Forgotten Orphans that reveals that every day, about 850 children in the U.S. experience the death of a parent, and that childhood bereavement is on the rise in the nation and across every racial and ethnic group. This is frightening data. What do you think is contributing to this?
Joyal Mulheron [00:20:33] It is frightening data. And frankly, I don't think it's surprising because we've had concurrent mortality epidemics for decades. It's not just simply the addition of COVID. We've had homicide, suicide, overdose, maternal mortality. There are also increases in traffic fatalities. There are also increases in chronic diseases. We're seeing this across racial ethnic populations. We also saw it in every state in the country. And so it is the cacophony of mortality events that are taking the lives of working men and women, and then leaving their children vulnerable to really precipitous outcomes. I think it's a huge problem, if not a crisis.
Melissa Ceria [00:21:17] What are some of those potential outcomes?
Joyal Mulheron [00:21:20] So, we know that bereaved and orphan children, specifically who experienced the death of a parent, are more likely to drop out of school or experience academic failings, certainly mental health distress. But there is also increased risks in substance misuse and self-harm, and suicide, and suicide attempts, and premature death due to any cause and incarceration. It's related to violent crime. There are a number of studies that, particularly when pulled together, you can see that when a child's parent, or you know one of their anchor people die, that it places them at risk for a whole host of other public emergencies and public emergencies that the United States has efforts on, but not necessarily looking at bereavement as a precursor, or as an initiation, or gateway event to these other public emergencies.
Melissa Ceria [00:22:22] Okay, so this is happening all across America. We're aware of what's going on, and yet you call it an epidemic that is "hiding in plain sight." Hiding because we are not tracing it back to its source of origin?
Joyal Mulheron [00:22:35] I think this reminds me of the early days of the opioid epidemic. I believe there were a couple of people on the West Coast who began looking at the data and thinking, something's going on here. How do you go from your chair at your desk to amplifying something of this type of proportion? It just takes a lot of time and I think we're making progress. But you're right, it is hiding in plain sight.
Melissa Ceria [00:23:00] Is this something now that has become a priority for you in your work?
Joyal Mulheron [00:23:04] Absolutely.
Melissa Ceria [00:23:05] What do you think can be done on a national policy level to address this?
Joyal Mulheron [00:23:09] So on a national policy level, there are a couple of things that we can do. I mean, one, we could just simply begin collecting the data. CDC collects mortality statistics, but they don't collect who survives those deaths and what the implications are. For bereaved children specifically, we know that more than half of bereaved children do not receive their Social Security benefits that we already know they're eligible for. So more than half are not receiving those benefits. And as a result, they grow up in greater poverty, they attain less academically, and they earn fewer wages for the rest of their lives. So why are they not receiving their benefits? I don't know, but that is something that we're working very hard at right now and trying to just confer access to these benefits for children and their families. There are a number of other concerning trends and policy implications for bereaved and orphan children. I won't delineate them all now, but there are a host.
Melissa Ceria [00:24:08] Grieving is invisible. It's hard to know when somebody is in that much pain. What are the signs, though, that we should be looking for?
Joyal Mulheron [00:24:18] Now, I am not a therapist, so I will not come at this answer from a professional background, but from a peer background. To someone who is grieving that's going to manifest in a lot of different ways. It could be a withdrawal, it could be some social isolation, just because simply being in the world is painful. There are a number of reminders: You could be driving down the road and having a perfectly fine day, and then a song comes on the radio that might have a special significance. Or walking into the grocery store, and walking by the cereal aisle that was your child's favorite cereal. Or even, frankly, checking out and then receiving a coupon for something that you no longer need. And so there is a tendency, and I think it is an appropriate tendency is often what I say to familie,s to somewhat withdraw just so you can protect yourself from additional pain that you might unexpectedly encounter out in the world. There are other signs that someone could need support that is, if you see increased drinking, moodiness. On the flip side, I would just say to just be present, and to listen, and to not offer any judgment, but to be there consistently for them, and to show up not just to deliver a casserole or some food in the beginning, but to really be there consistently over the long haul is incredibly important.
Melissa Ceria [00:25:51] We've talked about this on a policy level, but I'd like to get your thoughts on how can we, as individuals, help lay the groundwork for a more compassionate society on this topic?
Joyal Mulheron [00:26:03] I think the first thing is that we have to value one another, and value the relationships that we hold. I think in some ways, while social media has connected us in really wonderful ways, it's also dehumanized people along with entertainment, frankly. And so really coming back together and honoring the value that each of us make in society, I think, would be an enormous first step.
Melissa Ceria [00:26:34] You've also talked about how important it is for the entertainment industry to represent these issues responsibly.
Joyal Mulheron [00:26:41] Yes. I think there are many opportunities where the entertainment industry can at least, particularly I mean, we saw this, for example, in Saving Private Ryan. I don't know if you remember when that was released, there was a lot of advance notice that there were going to be reenactments of war that could be triggering for some vets or other individuals. I mean, I didn't realize it at the time, but in retrospect, it is such an honor that the directors and producers of Saving Private Ryan thought enough of the people to give them enough notice. We do receive a lot of feedback from families and individuals who may watch a documentary or a movie, and then inadvertently witness a scene that can become incredibly painful. To that end, I will also tell you that families do not own their stories. And so right now, there are docu series on crime dramas, and the directors and producers never talk to the families, and the families just log on to watch a show and they discover that their mom, their brother's murder, their friend's murder is now for consumption on our paid programing, on our paid channels.
Melissa Ceria [00:28:09] How do they get access to these stories? Through police reports?
Joyal Mulheron [00:28:13] Correct. And there are a number of directors and producers who contact the police stations directly. And because it's public record, the police stations make a determination as to whether or not they're going to release that information. And in some cases, they do. The insatiable appetite that people have for crime in America, or these crime stories and podcasts, not really realizing there are real people on the other side. So really, families have very little to no rights. And particularly when you're looking at entertainment, you're really looking at ratings and selling and again, meeting that insatiable appetite. And there's really no rights for the victims themselves.
Melissa Ceria [00:29:00] And are you working on potentially introducing policy around that?
Joyal Mulheron [00:29:05] It is at the forefront of the priority list. But I'll tell you, often when I talk to people about the policy concerns in this area, it's like a teenager's dirty room. There is so much to work on. This is one policy, the funeral industry is concerning, practice standards for grief therapists is concerning, getting benefits to children. Just one point that keeps me up at night is anywhere from 50 to 80% of incarcerated children experience the death just prior to being incarcerated. We are incarcerating grieving children in America. I mean, these are stunning statistics. There is a lot of work to do in this area, and we appreciate being able to participate in forums like this to share our message and how important the work is.
Melissa Ceria [00:29:55] I have a closing question for you, Joyal, because clearly you have a lot of work ahead of you. You've seen a lot. How has it changed you?
Joyal Mulheron [00:30:03] That's a wonderful question. I think I live my life somewhat differently now. Before our daughter died, I was very conscientious of my contributions to society. And what was I doing to somehow advance or improve humanity on some level? Now I feel that I'm doing that, certainly on a day to day. But if anything has changed really more precipitously, it is that I live with no regrets and tomorrow is not promised. I don't hem and haw about a lot of things. If an opportunity arises, I say go for it. You might not have that opportunity tomorrow.
Melissa Ceria [00:30:43] Joyal, on that positive note, thanks so much for joining me in conversation. It's been a pleasure talking with you and I wish you all the best.
Joyal Mulheron [00:30:52] Thanks so much.
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Website: Evermore
Instagram: @joyalmulheron and @evermoreforall