Disenfranchised Grief

Are there times when it seems inappropriate to grieve in public?  What happens when those around us fail to recognize our grief or our right to grieve?  Dr. Kenneth J. Doka takes us through the concept of Disenfranchised Grief, and how it can affect our ability to properly process our grief.

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Dr. Kenneth Doka: 0:00

You have a serious loss, but for some reason others don't acknowledge that loss.

Michael Liben: 0:14

Welcome to the Fourth Season of "Heart to Heart with Michael", a program for the bereaved community. Our purpose is to empower members of our community. This season we're looking at grief in its various forms and we'll be looking at the role of trauma as it affects grief. Today's program is"Disenfranchised Grief". All of us have had contact with grief. But do we have a complete definition of grief in our minds? What about occasions when our own grief would appear to be awkward or inappropriate at best? Are there times when it seems best for us not to participate publicly in grief? And in so doing are we denying ourselves the opportunity to process our own grief? With us here in the studio is Dr. Kenneth Doka, who will talk about disenfranchised grief and how it affects us and our relationships with those who mourn openly. Dr. Kenneth J. Doka is a Professor Emeritus of The College of New Rochelle, and senior consultant to the Hospice Foundation of America. He's the author of many books and articles on the subject of grief, including "Grieving Beyond Gender" and"Disenfranchised Grief". Dr. Doka is highly esteemed in the field of death and bereavement. Previously, he has served as the president of the Association for Death Education and Counseling, and chaired The International Workgroup on Dying, Death, and Bereavement. Over the years he has received multiple awards, most recently from the Association for Death Education and Counseling for significant contributions to the field of thanatology in 2014. In 2006, Dr. Doka was grandfathered in as a mental health counselor under New York state's first licensure of counselors. He has given keynote speeches at conferences throughout the world, including Israel, where I met him last year at the International Conference on Grief. Dr. Doka, thank you for joining us on the program.

Dr. Kenneth Doka: 1:50

I'm honored and delighted to be here.

Michael Liben: 1:51

Let's talk about disenfranchised grief. How did you discover that as a concept, how did that come to you?

Dr. Kenneth Doka: 1:57

Well, a number of years ago ago I did a study, this is in the 1980s so it's quite a few years ago on the grief of ex spouses. And that really started from a classroom experience. And what happened is we were, I was doing a class on grief counseling, and we're talking about the grief of widows. And one of my students said, "If you think widows have it tough" - and my graduate students are older, mostly they're, they've had significant life experiences and come from a wide variety of professional backgrounds. So anyway, one of my students said, "If you think spouses have it tough, you want to see what happens when an ex spouse dies". And I never had really was like what I call "a two by four moment" like you get hit on the head by a two by four. Like because I never had thought of that before; the grief of ex spouses. And so I decided to do a study of that and, and two interesting things came out of this study. The first was, now remember, this was in the early 80s. This is you know, close to 40 years ago. The first thing was that you have to remember I started in the field when I was 10. No, I'm only joking about that.

Michael Liben: 3:07

I get it. No. Yeah, I've been podcasting since I was four. Yeah. They called it something else.

Dr. Kenneth Doka: 3:13

Yeah, so in any case, I'm doing this study and, and two things came out of this study. And the first was that the people I interviewed, all ex spouses who had experienced the subsequent death of their, of their divorced spouse, mostly husbands, given the nature of the sample, most of them compared the grief at their, at the time of the death, to the grief they experienced at the time of the divorce. Now, this was interesting, because if you if you would have looked at an index, we didn't have Google in those days, but if you would have looked at an index, one of those, you know, archaic search techniques we used in the old days and right around the time of the scrolls, you would have, you would have, you would have never found anything on grief and divorce. You would have found the psychological[equivalent] of divorce, you know what happens to you emotionally and psychologically once you experience a divorce. But it was interesting that almost without without exception, these people were defining it as grief. And the second thing that came out of the study is people varied in terms of the intensity of their grief reaction at the death, time was a factor but it wasn't the only factor. But all of them said, "Whatever grief I had, nobody seemed to understand it. Nobody seemed to know why I would be experiencing this grief". And I thought that's that's very, very interesting. And I thought, well, let me do another study now, let me do a study of many people on the other side of that, people who had had affairs and and their lover died. And you can imagine it's hard to find that sample. So what I ended up doing was I ended up broadening it to people who were in intense, romantic, dyadic relationships to person relationships, without benefit of marriage. So people who were having affairs, people who were living together, people who were, who were dating, maybe for years, but had never got engaged, people who were engaged, but the person died before they got married. We also included gay and straight couples in that. And in those days, this is again, the early 80s, gay gay marriage, same sex marriage was not legal anywhere in the United States. So these were people who had worked together without the benefit of marriage. And it was really interesting that one of the messages that came across was,"I had an intense relationship, but nobody understood my grief". For example, one woman who I interviewed, husband died, the excuse me not husband, fiance died, the Sunday before the Friday they were to marry. And she entered and she went to a widow's group. And as she told her story, one of the widows said to her, "I'm not sure if you should be here, dear, because all of us were married". Now, and to the credit of the facilitator, the facilitator in the group jumped back in and reassured her that's where she should be, but she never did go back again.

Michael Liben: 6:34

I want to break for a second because I think we missed something in the definition that disenfranchised grief or it affects people who don't have a recognized outlet for grief. I'm not sure you made that clear enough.

Dr. Kenneth Doka: 6:49

Yeah, I guess I was waiting for that question of what's the definition. But what it refers to is that you have a loss, but because but if some reason, the loss is not openly acknowledged, socially sanctioned, or publicly shared. So, so that would be the definition of when you have a serious loss, but for some reason others don't acknowledge that loss.

Michael Liben: 7:14

Now and then you you feel that you're prevented or if you try to publicly work that grief out, then you would, you would find that there's no real place for you to do that. I have an example that's a little less shocking, but but nonetheless real. I had a neighbor, young lady, she was a babysitter for my children also, many, many years ago. Her stepfather died. Now he raised her for most of her life, but he was not her father. And her father was alive and well and she had an ongoing relationship with her father, but her mother had remarried and, and this would happen. So the stepfather died, it's a Jewish home and they sat Shiva and I went to visit and I saw that this young lady was up and around and helping and doing things that you don't generally do when you're sitting Shiva. I said,"Why are you doing this?" and she said, "Well, he's not my father. And so I'm not I'm not mourning him". Now she was okay with it because she had a good relationship with her own father and everything was fine. But I can imagine that you were in a situation where the person you know is your father raised you, you want to mourn him. There's nothing that says you can't, but you're not invited to that party. You're not, you don't get a ticket to go into that that mourning event of a week. And I can imagine that that can be difficult for people.

Dr. Kenneth Doka: 8:31

Yeah. And and it can be a lot of different reasons for it. In some cases, it's because just like you said, and the first two cases that I brought up, the relationship isn't recognized. In some cases, it's because the loss itself is not recognized. Maybe for example, you have a situation where, oh, you had a perinatal loss or chose to have an abortion. Or you break up with your girlfriend, you know, when you're 16 years old. Yeah, it was interesting, Lou LaGrand did a study of college students and the most profound loss that they reported today, and this is 20,000 college students, was the loss of their first significant love.

Michael Liben: 9:14

You know that that's really true. I mean that right now everyone who's listening just went "ugh". Yes, really true.

Dr. Kenneth Doka: 9:20

You can name I'm sure you can name the first first, first romance of your life.

Michael Liben: 9:25

I absolutely can. And I can tell you more that about four or five years ago, she died of cancer and I had never met her husband but, you know, I knew that she was married. We had stayed in contact over the years, across great distances. She was in New York, and I'm here in Jerusalem. And yet, when she died, I felt a very significant, significant loss, and one of the things that actually surprised me and gave me a little bit of comfort, was it when our mutual friend called to tell me that she had died, she said that when she died, her husband said, "Make sure Michael knows".

Dr. Kenneth Doka: 9:59

Oh, that's sweet. Yeah, yeah. And then sometimes it's because the griever isn't recognized, you know, somebody who, for instance, has intellectual disabilities or sometimes the very old or the very young. And then other times, let me just give you the the other categories. Sometimes it's because the death is disenfranchising. You know, for instance, early on AIDS deaths; you know, you didn't want to tell anybody that somebody died of HIV or even suicide sometimes.

Michael Liben: 10:29

Right, right.

Dr. Kenneth Doka: 10:29

And so all of these are factors or sometimes just the person doesn't grieve in the way we expect them to grieve.

Michael Liben: 10:35

Has anyone considered the possibility that there are certain cultures that will foster this disenfranchisement on purpose in order to bolster up their own cultural structure?

Dr. Kenneth Doka: 10:47

Oh, sure. You know, for instance, probably a classic example of that is during the Stalinist era, of, of the Soviet Union. If somebody was killed in one of the purges it was you know, arrested and executed in one of the Stalin's purges, it was considered appropriate to write to Stalin to thank him for removing this cancer from your from your family.

Michael Liben: 11:13

Oh my gosh.

Dr. Kenneth Doka: 11:14

So here the society is saying you cannot grieve that loss because to grieve that loss shows disloyalty.

Anna Jaworski: 11:29

“Home Tonight Forever” by the Baby Blue Sound Collective."I think what I love so much about this CD is that some of the songs were inspired by the patients."

Dr. W: 11:40

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Anna Jaworski: 11:50

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Dr. W: 11:56

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Anna Jaworski: 11:57

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Jamie Alcroft: 12:03

Hi, my name is Jamie Alcroft and I just published my new book, “The Tin Man Diaries.” It's an amazing story of my sudden change of heart as I went through a heart and liver transplant. I can think of no better way to read“The Tin Man Diaries” than to cuddle up in your favorite Hearts Unite the Globe sweatshirt and your favorite hot beverage, of course, in your Hearts Unite the Globe mug, both of which are available at the HUG Podcast Network online store or visit heartsunitetheglobe.org

Anna Jaworski: 12:33

This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. The opinions expressed in the podcast are not those of Hearts Unite the Globe, but of the Hosts and Guests and are intended to spark discussion about issues pertaining to congenital heart disease or bereavement. You are listening to "Heart to Heart with Michael". If you or someone you know would like to be a guest on Michael's program, please email him at michael@heartoheartwithmichael.com. Now, back to our show.

Michael Liben: 13:11

Ken, when I first heard your lecture in Israel, you talked about military death as disenfranchised in American culture. And I was really surprised about that, because in Israel, when there's a military death, it makes the news. If there's time, if there'll be footage from the funeral, if possible, there'll be a soundbite from the family. The commanding officer will have something to say it's very, very, very enfranchised. And I think it has to do with the difference of the uses of the military in both of our countries. Do you want to speak about that?

Dr. Kenneth Doka: 13:39

Yeah, I was very interested when when I was in Israel speaking and, and people told me about those kinds of differences and, and and I think in the United States, certain work like military or police work is considered dangerous work just by its very nature. And so when a death comes it's, well, you know, he, he joined the military, he joined the police, he joined the firefighters. He knew that was a he knew that that could happen. So in some ways, you know, that comment, even though it may be an honoring comment is still considered by many parents to be disenfranchising.

Michael Liben: 14:19

Interesting, interesting. I think it also has to do with the uses of the military. I was drafted like everybody else when I was younger, and I'm a volunteer police officer for many, many years. And I think when Americans go off to war, with everything that they say, and everything that they do, I don't really believe that any American soldier goes to Afghanistan believing that he's physically defending his home, or his family. He may be thinking he's defending an American way of life, or an American philosophy. He may be thinking he's doing the right thing in the world. All of that may be possibly true. But I think when an Israeli goes to, to war, or at least gets called up, he literally is thinking about his wife and his family and his kids in his home. We clearly go unhappily into a dangerous situation, knowing that the consequences would be catastrophic at home. And I think that's why there's so much more enfranchisement around a military death in Israel than there is the United States. In the United States, only 1% of all people are under arms. And most people don't know anybody who is. I think and I think that has to do with it.

Dr. Kenneth Doka: 15:23

And I think that's true. And one of the things that has happened in the United States now is there's a wonderful, wonderful support group. I'm on their advisory board called TAPS, Tragedy Assistance Program for Survivors, which is focused just on the unique problems of military death. So that's been an in-franchising move, because again, they're not supported by the general culture.

Michael Liben: 15:45

I find that that staggering. I mean, when I was a kid growing up in New York, you know, so Vietnam was on and people were coming home every day. And then every Thursday afternoon, every Thursday evening on the news, there was there was a body count. I mean it was so much more a part of society and and, you know, up until the last two years of that war, maybe because it was a it was a draft, and maybe that's why I said more people were aware of it, but I find it so disturbing that that's not that's a disenfranchising moment that people would want to not talk about a military death. But if we're on the topic of of other disenfranchising moments and and deaths, let's talk about suicide. I think that maybe changing from what I understood from the conference last year, but suicide still carries with it, an undeserved stigma on the entire family. How does that affect this?

Dr. Kenneth Doka: 16:38

I think you really nailed it on the head and there is a stigma with when anybody dies by suicide. You know, and I and I think I like to think that's changing. I'm not sure that it's changing as fast as it should. You know, there was an interesting study that was done, which speaks to this where it's college students were given a scenario, and the scenario was that a car was parked on a hill. And somehow the brakes slipped. And in some cases, the car just slightly banged gave no damage to the car in front of it. And then, you know, each each scenario became progressively worse to one where the, the car rolls down the hill at great speed and kills a little boy on a bicycle. And then in each of them, they know that everybody had the same scenario and same questions with the exception of you know how the scenario ended. And the more dangerous the consequences when it hit the kid, the more likely people were to say it was the fault of the driver. Because you don't like to think that you could just leave a car and then something devastating can happen. The same thing happens with suicide. We want to blame somebody because we don't like to think that our son or our daughter or our spouse will die by suicide. You know, and so we'd like to protect ourselves by saying, as long as we do things, right, that won't happen to us. It's a psychological defense.

Michael Liben: 18:12

Well, I guess so but but still a person has died and somebody you loved you don't and you want to mourn that person. And so really, what's disenfranchising about it is you can still mourn, I think you probably would, but you'll be mourning alone. Your friends won't be there.

Dr. Kenneth Doka: 18:27

Yeah. And you might choose to even have a private funeral so you don't need to discuss the reasons why.

Michael Liben: 18:33

Let me ask you, you mentioned earlier, you talked about gay couples, which now in America is much more open and much more legal and much more out there. I know you have a story about a group you were working with, construction workers, who were working through their grief and one of them was gay, and you knew it and he knew it, but no one was talking about it. And you had made a decision not to bring it up unless it came up. What happened there. Do you want to talk about that?

Dr. Kenneth Doka: 18:59

Sure. Sure. Yeah. was when it happened is I was running a grief group for men, and one of the men who came to see me said, you know, I lost my lover. We were gay. Again, this was before gay marriage and the most of the group were these older men significantly older from him. And, you know, I was talking about my old neighborhood of a story. This was in a story. And a story of was an old kind of Italian, Greek, Irish, very ethnic, you know, working class neighborhood. And now in the process of being gentrified, so new groups are moving in. So it was sort of a clash of cultures in some way too. So he said,"You know", he said, "I'd like to join the group, but, you know, when I feel ready to reflect, I'll share". So he's talking about his his, his, his loss, and someone of the other guys says to him, "How long, how long were you with her?" And he decides at that minute to disclose, and and he says, "It wasn't her, it was him". And there's a moment where you can just see these these men who were sort of shocked, and they're trying to relate to him, you know, maybe he's in his 40s, they're all in their 70s and above, you know, and there's this generational shift. There's"I was five hours old when I had my first surgery." "The only this cultural shift, a whole lifestyle shift. And, but then one of the older men in there put his arm on the guy and said,"But you loved him, right?" And I love it. Yeah. And he, and he started crying and said, "I loved him very much". And he said, "Well, you should be here". And they were very accepting. Now that there's a little anecdote to that story that I think I tell and that I knew, and they often invited me but you know, I choose this as their time. After the group, they go to the local bar and have a few drinks. And, and so when the guy came in, he said,"Can I come in a little early just to process what had happened last week?" And I said,"Of course", and he came in and he said, "You know, they invited me out for drinks with them and I and I did". I said, "How did that work out?" he said, "It really worked out well". He said, he said, "We all shared a pitcher of beer". He says, "Now I would have preferred wine", he says, "but I didn't want to shock them too much that night". But it was a great story. And and I think, you know, what we often say with with gay couples is, and my research with gay couples, has often shown that they'll talk about the range of enfranchisement. And what they mean by that is that is that some people enfranchise them and will recognize and acknowledge their grief, especially within the gay community, but others will not. advice I can really give someone like that is to be there for your family." "This is life and you have two choices. You either live it or you sit in a corner and cry."

Anna Jaworski: 21:53

I am Anna Jaworski, and the host of "Heart to Heart with Anna". Join us on Tuesdays at noon Eastern Time on Spreaker or BlogTalk radio. We'll cover topics of importance for the congenital heart defect community. Remember my friends, you are not alone.

Michael Liben: 22:09

If you've enjoyed listening to this program, please visit our website HeartsUniteGlobe.org and make a contribution. This program is a presentation of Hearts Unite the Globe, and is part of the HUG Podcast Network. Hearts Unite the Globe is a nonprofit organization devoted to providing resources to the congenital heart defect community to educate, empower, and enrich the lives of our community members. If you would like access to free resources pertaining to the CHD community, please visit our website at CongenitalHeartDefects.com. For more information about CHD, hospitals that treat CHD survivors, summer camps for CHD families, and much, much more.

Closing: 22:49

You are listening to heart to "Heart with Michael". If you have a question or comment that you would like addressed on our program, please send an email to Michael Liben at michael@hearttoheartwithmichael.com. Now back to "Heart to Heart with Michael".

Michael Liben: 23:04

We've been talking about disenfranchised grief as a real phenomena. But does it need to happen less? Or is there something that we can do to change this? Or is it good that that happens at all? How does this work?

Dr. Kenneth Doka: 23:14

Well, it's an interesting question and one that I really hadn't thought of till I till I saw it. You know, there's always going to be losses that will not be acknowledged by society. I think one of the roles of individual grievers is to find support when they need support wherever they can find it. And in some cases of disenfranchised grief, you may not be able to find it within your family, you may not be able to find it within your circle of friends. You may be able to find it in a support group, you should be able to find it with a counselor. So you know my notion would be that if you're experiencing any form of disenfranchised grief, and and you're not getting the support that you need be an advocate for yourself, find it. And that may mean educating the people around you, which is, I agree, an extra burden. It may mean seeing to see if there are any kinds of support groups that speak to your kind of loss, or finally, going to a counselor who, who can provide some validation and support.

Michael Liben: 24:22

I would have to think that in the age of the internet, finding a counselor who deals in your niche, I think is easier than ever before.

Dr. Kenneth Doka: 24:29

I think that's true.

Michael Liben: 24:30

And once we've given that concept a name and calling it disenfranchised grief, will people be able to work better with it, understanding what they have and understanding? I understand that people don't understand my grief. And I understand that I'm gonna have to find my path. But does it make it easier now that they have a name for it?

Dr. Kenneth Doka: 24:49

I like to think it does. And one of the most satisfying things about writing the two books that I wrote about it, is that I occasionally get letters from people who say you gave my grief a name. One of the most poignant, was a woman whose son lost his leg in a crash the night of his high school prom. And so, his friend who was driving died, he lost his leg. She, you know, she said, "My son was this happy go lucky kid who probably partied a little bit too much. But when he emerged from this, he was a very different boy". He was, he decided he wanted to become a physical therapist, he became a much more serious student in college. He became very active in Students Against Drunk Driving, gave lectures to students about the dangers of drinking and driving. And she said, "I love him and I am so proud of him", said, "but I missed that boy who left. The Jason who left that night never came back". And she says, "And you gave my grief a name". So I think that's one of the useful things.

Michael Liben: 25:58

Well, let's you, you've mentioned it. Let's go there. Tell us about your books. Oh, well find them. This is your moment.

Dr. Kenneth Doka: 26:06

Okay. Well, the book is called"Disenfranchised Grief, New Directions, Challenges and Strategies for Practice". That's the newest book that came out. Let me just check the the day I want to say 2002. Yeah, 2002. It's available on Amazon. I'm pretty sure the first one is out of print. But you may be able to find an old edition, but the new one is, is broader and expands the definition even more broadly.

Michael Liben: 26:33

I've heard you speak and now we've had these discussions here. What I particularly liked about talking with you is that you're not talking down and you're talking to me face to face. Do you, are your books for therapists or your books for people who who are grieving?

Dr. Kenneth Doka: 26:49

This book primarily is for therapists, although people who are grieving have told me they found it useful, but I have another book that just came out a few years ago, "Grief is a Journey", and that one has significant material on disenfranchised grief too and that's written for people who are in the midst of grieving.

Michael Liben: 27:07

If I have a friend who's grieving now, who may be in a difficult position or maybe somewhat disenfranchised, or or here in Israel, Judaism doesn't give them the the appropriate outlet to grieve, how can I help them? What can I do?

Dr. Kenneth Doka: 27:22

Well, I think the first thing is to listen. I think the second thing is to validate their grief to to say, yeah, I understand why you're grieving. This is a, this is a big loss. And then, you know, one of the things that I talk about in my writing is what I call therapeutic ritual, you know, in all of our faiths, I happen to be Christian. But all of our faiths have rituals around death and dying, and sometimes don't those rituals don't speak to our particular loss. But that doesn't mean we can't create our own ritual. And I would say if you feel you need to do something, do it.

Michael Liben: 27:57

Can you give me an example of something that people can do that creating a ritual? What can you do?

Dr. Kenneth Doka: 28:01

One of the ex-spouses talked about the fact that, that she created a ritual where her and her two children got together and just had their own way of mourning their father, and the complicated relationships that they had with him. And they met at a pizza parlor. And had a, but what was interesting about this ritual is that iis she said, "In the happiest days of our marriage, we didn't have a lot of money, the kids were young, and we go to the pizza parlor. And we just get one large pizza, and that's all we could afford. They didn't bring their spouses, they didn't bring their children, just the three of us. And we all talked it through over pizza and soda". And I think it's important to realize that every relationship is unique. You know, when my dad died, I said as part of my eulogy, that we all lost a different father. Because my relationship as the youngest, you know, was different than my sister's relationship and my brother's relationship. We all came at different points in their lifecycle. So we have to understand the uniqueness of grief. And and I just want something about miscarriages too because often we focus on the on the mother and certainly the mother experiences grief, but fathers, siblings, grandparents, you know, all are affected by that loss.

Michael Liben: 29:24

Ken Doka, thank you so much for coming on the program today,

Dr. Kenneth Doka: 29:27

Michael, thank you for having me. This was delightful.

Michael Liben: 29:29

This concludes this episode of "Heart to Heart with Michael". I want to thank Dr. Kenneth Doka for sharing his experience with us regarding this topic. Please join us at the beginning of the month for a brand new podcast. I'll talk with you soon. Until then, remember, moving forward is not moving away.

Closing: 29:44

Thank you again for joining us. We hope you have gained strength from listening to our program. "Heart to Heart with Michael" can be heard every Thursday at noon, eastern time. We'll talk again next time when we'll share more stories.