010 – Combating Stigma with Kevin Williams of The Depression and Bipolar Support Alliance
Experiencing stigma is a real and significant challenge for people with a health condition. And as a health organization, combating stigma is a complex issue.
In this episode, Kevin Williams of The Depression and Bipolar Support Alliance (DBSA) comes on the show to discuss why stigma is such an important issue, the 3 different types of stigma, and how DBSA addresses stigma through education.
Don’t forget to register for the 2021 DBSA Virtual Leadership Summit (September 27th – October 1st, 2021) if you’re interested in learning how you can make an impact in improving the lives of peers with mood disorders.
Spencer Brooks 00:05
Welcome to Health, Nonprofit digital marketing. We’re a podcast for nonprofit marketing and communications leaders who are using the internet to reach and engage people with health issues. I’m your host, Spencer brooks of Brooks Digital, a digital agency for health nonprofits. Today, I’m joined by Kevin Williams. Kevin is the communications vice president at the Depression and Bipolar Support Alliance. They’re nonprofit providing hope, help, support and education to improve the lives of people who have mood disorders.
Spencer Brooks 00:38
So, Kevin, I’m really excited to have you on the show today. Thank you so much for coming and sharing your wisdom with listeners, could you just start by giving us a brief overview of who you are and what you do?
Kevin Williams 00:49
Yes. And Spencer, thank you for inviting me on today, it’s a pleasure to be a part of your show. And as Vice President of Communications, that DBSA, Depression and Bipolar Support Alliance, it’s my role to make sure that the messaging and communications that go out on behalf of the organization are consistent across all platforms, we know that our stakeholders engage and encounter DBSA from a variety of different touch points, could be digital, could be print, could be from a website, could be from a personal event that they’ve attended. And so it’s my job to make sure that we are managing communications in such a way that it inspires our audience and engages them to participate and and to become more active in our efforts, as advocates, as supporters, as volunteers, as funders, all working together to improve the mission of making life better for those who live with mood disorders.
Spencer Brooks 02:09
Oh, thank you, Kevin. And I know one of the things that we were talking about before this recording, was, speaking of your audience, is stigma. And that’s what I wanted to actually spend a bulk of our time talking about today, because I understand that combating stigma is a major part of your work. So could you just start by explaining to listeners what is stigma look like at least in your work? And why is it such an important issue for people with mood disorders? Absolutely. Well, as I stated earlier, the mission of DBSA is to be an advocate for the peer. And by peer, we mean the individual living with a mood disorder, depression, or bipolar depending. And what we know from our work is that peers encounter significant barriers to living a life of high quality, whether it’s an employment, acceptance, treatment in the law enforcement system, treatment by the medical community, those difficulties are fueled in large part by stigma and stigma is simply negative stereotypes that drive the larger communities perception and treatment of those who live with mood disorders. So, for example, the most common types of stigma usually fall into one of three categories. There is social stigma, which has to do with the promotion and promulgation of negative stereotypes by the larger community. And that manifests itself in a variety of ways Spencer, it could be simple discrimination. For example, it makes it more difficult for peers to gain employment, makes it more difficult for peers to gain access to the health care they need. It creates an environment where law enforcement and even the justice system treat those who live with mood disorders in a disadvantaged way, so that their lived condition is misdiagnosed or mis interpreted, and that can lead to unfair and harsh treatment by our legal and justice system, it can also result in other negative results such as avoidance by friends. And so peers can experience in many instances increased socialized isolation. Also, peers could experience housing discrimination, they can have difficulty in finding housing, places to live. So social stigma is one area. Another type of stigma is what we call self-stigma. And that is the occurrence when the individual internalizes negative stereotypes, which are fueled in large part by the treatment that they’ve received from the larger community. And what happens in self-stigma, Spencer, is that the individual, the peer begins to realize lower self-esteem, shame, hopelessness, that can lead down a path of regrettable circumstances, from self-harm, self-loathing, even going to the to the unfortunate, largest result of death by suicide. And there is a third category of stigma related that we call courtesy stigma. And that affects the family members of peers, family members can become stigmatized, simply by having a relative who is living with a mental health condition such as depression, or bipolar. And how that manifests itself is, again, the peer not getting the emotional support, that can make all the difference in the world, in enabling the pier to live a life of high quality, to live a life in which they carry themselves with higher self-esteem, and which motivates them to live to their highest potential in terms of pursuing the type of life that they’d like to live.
Spencer Brooks 07:31
Wow, that that is a great breakdown of stigma, Kevin, it’s clearly an incredibly complex topic. And I really appreciate how you broke that down into those different categories. One of the things that actually immediately stood out to me about that is, it seems not only very complex, but also very interconnected. Where I see these, as you outlined cause and effect relationships between social stigma, self-stigma, courtesy stigma, where these things play into each other. It sounds like.
Kevin Williams 08:07
Yes, they do.
Spencer Brooks 08:08
So how do you go about unraveling this? I mean, where are you starting? Is there a place where in your work you’re going in first, or are you tackling this cohesively? Could you help just outline to me your approach to tackling this problem?
Kevin Williams 08:29
Spencer, we’ve learned that the most important first step in addressing stigma is through education, and at DBSA, that education that takes place as our mission states, by amplifying the voice of the peer, everything starts, all of our work starts with amplifying the voice of the peer. We believe that the better the larger community understands the lived experience of the peer, the better chance we have of eliminating misunderstandings, of dismantling baseless fears, opening wider the doors to access for employment, for access to health care for fair treatment by our legal system, and simply for acceptance by even family members. We believe all that is driven by an effort to amplify the peer voice, allowing them to speak and be heard and making sure that decision makers throughout multiple aspects of society, hear those voices, take that information into consideration as they develop drug therapies, as companies develop workforce plans that make it more accessible for peers to work in a corporate environment or any work environment, that make it easier for peers to access the right kind of health care they need, that make it better for peers to have loving supportive households, friendships, and support groups that encourage them, motivate them and inspire them.
Spencer Brooks 10:33
As you’re talking. It rings so true. I think another might have been another podcast guest actually, that that dropped the line, that stigma comes from the unknown, I might be paraphrasing it a little bit. But it immediately rang true to me when you when you mentioned education, or amplifying the voice of peers, just as a step to begin addressing stigma. So, I guess my follow up question for you, then Kevin is, how are you going about amplifying those voices so that they’re heard by a fairly diverse group of different individuals and different stakeholders? How do you go about tackling that challenge and getting their voices and in those ears?
Kevin Williams 11:14
We have a number of vehicles, through our communications and through our marketing, that elevates the voice of the peer, and really serves as a warning to our larger community, about the issues that affect the lives of our peers, the quality of life for our peers, in negative ways. So, for example, we’ve got, we’re currently running a podcast series called My Younger Self: I’m Living Proof. And what that is, is a series of podcasts interviews, conducted with older, they’re still young adults, but they’re in their 20s. And the exercise is for these individuals to write letters to themselves when they were, let’s say, 10 years old, 12 years old, okay, so that they can share their knowledge today with that younger self. It’s an opportunity for the peer to understand better the experience that they lived through, when they were a preteen. And by putting this in a podcast series, our hope is that listeners, whether it be younger listeners, or parents or caregivers of younger listeners, as they hear this, they can understand how they can alter their behavior, how they can change their speech, to make life easier for that young person in their household to live a better quality life. Another thing that we do on our website is that we print a guide called the compassionate language guide. And it is a booklet we put together, which provides tips on language, how individuals can use better language to speak with and speak about peers. So, for example, in our compassionate language guide, we discourage the use of words that encourage harmful stereotypes. Words like crazy, or nuts, phrases that convey a misinformed or ill informed understanding of what it’s like to have a lived experience with mood disorders. So, we completely discourage the use of phrasing such as people can overcome their mental health condition if they simply quote unquote, try harder. If they simply quote unquote, concentrate, because we understand that these issues are much more complicated than that. And they need an understood and educated approach so that the peer can have a better experience and that their friends and caregivers and even their doctors can provide better treatment and a better environment for the peer. So, we also, we also in a lot of our communications, we make the effort to point out situations that promote negative stereotypes of those who are living with a mental health issue. We point out examples in the media, either through news reports, or in movies that portray criminals, always as characters with mental health issues, where the villain in the movie, if it’s a murderer or something like that is always, obviously someone with a mental health condition. And so, we call that out. And we make it known to our community of stakeholders and advocates the harm that it does, and for them to be keeping a watchful eye for stereotypes like that and be prepared to write a letter or note to their local newspaper, to their local TV station, to point out their disapproval.
Spencer Brooks 15:50
Those are some really great practical examples, Kevin, thank you for sharing those, I am struck kind of by the diversity of different resources, where I can imagine a podcast that seems like hearing someone with a mood disorder read about their felt experience would be a very visceral kind of experience to hear. And then followed up by something like a more practical language guide on, here’s how you actually reduce stigmatizing language in day-to-day stuff. It seems like those go very well together. And it kind of fits it seems like all under this realm of social stigma that you’ve outlined in a way. And I did want to ask, though, about the on the self-stigma piece, I understand that that part of your work also includes support groups. And I wanted to ask you how those sort of play into the stigma conversation, in addition to everything else that you’ve been describing so far.
Kevin Williams 16:57
And I’m glad Spencer that you brought up our support groups, because specifically, the support groups were created and they are still extremely popular today, because of the benefits that they provide, in helping peers battle their self-stigma. There is relief, there is love. There is friendship that our peers find in support groups in that like minded community in which individuals can speak about and share a common bond of a lived experience with mood disorders. And whether our groups are online, which they still are largely today because of the pandemic, or whether they’re face to face, which those will be returning in the coming months, we have seen emails, and letters and other comments from our peers community over the years, really lauding the benefits that the support groups provide, because it’s a safe haven, it’s a supportive haven, it’s a haven where they can find ears that are willing to listen, and voices that can encourage and express an understanding for the lived experience that they are all going through. And there’s something healing and strengthening about taking part in an experience like that.
Spencer Brooks 18:42
I’m curious as well with your support groups for those peers. Do you find that as they go through the support group experience and maybe develop just developed more confidence? Do you find that they’re then equipped to go out with the examples you give them of just different stigmatizing portrayals in movies and TV and things like that? Do you find that they’re then able to actually go out and start to combat stigma on their own after going through a support group experience like that?
Kevin Williams 19:17
That’s a very good question. And what we’ve heard from our peers over the years, is one of the biggest benefits of the support groups is simply helping raise their own awareness, their own awareness of when they’re being triggered by the messages that they see in the public place. Whether it’s a media depiction, whether it’s language that they hear from being on the bus, or in their workplace, and to in a sense, sort of disarm the impact that sort of messaging might have on them, if they had not attended a support group, which is there to remind them, that language and those stereotypes do not apply, that they are not true that they are, in fact baseless, based on the science that we all know, based on the facts of how they live their lives. And so, they need not incorporate and internalize those messages anymore. Because they’ve been told and convinced that they’re all lies, and coming into an environment like that it’s almost like a booster shot, that you come in, out of the community, out of the environment, and you’re restrengthened, and you’re refortified and you leave that support group, in a better position to resist the temptation to self-loath, the temptation to internalize shame and hopelessness, that you might not benefit from had you not gone to the support group.
Spencer Brooks 21:13
I’m curious as well, I guess on the back of that is with COVID, you know, just coming, we’re recording this the middle of 2021. We’re coming out of this season of isolation. And so I can imagine that there’s this twofold event happening, perhaps where number one, the need is very great for resources for those with mood disorders, but also, that there’s just been more conversation around the fact that this exists, and that COVID has increased this. So, I guess my question to you, Kevin, is the do you think that the discussion in the media and in the national conversation about the effects of COVID on mental health, do you think that that has actually helped to improve stigma? Or are there other factors that I might not be considering?
Kevin Williams 22:16
Spencer, the reality is that the pandemic has resulted in a much larger platform for discussion of mental health, mental health issues, mental health disparities, and that’s a great thing. Because as a society, we can’t begin to properly address issues until we’re really willing to begin talking about them, because it’s through the conversation and the discussion, that understanding and learning takes place, which leads to innovation, which leads to improved circumstances. And so we are at DBSA, we’re thrilled. Not obviously, for the pandemic. But one of the resulting factors is that mental health has risen straight to the top of the discussion ladder, as far as a key issue that our country, our society needs to focus on. And that increased conversation has, in the past year, year and a half, has already led to some encouraging progress on the legislative front, where working their way through Washington and Congress are laws, which will increase access to mental health resources. We’re seeing changes in media depictions of those suffering from mental health conditions. We’re seeing changes in how law enforcement is willing to approach situations involving those with a lived condition of bipolar or depression. And the hope is that as society begins to focus more closely on areas like this, we’re going to see improved outcomes, which will benefit the peer community in the very near future.
Spencer Brooks 24:32
That’s very encouraging news, Kevin. And then it’s also great news as well for any listeners that might be working at a mental health organization as well. So, I’ve got to cut myself off from asking you more questions about stigma or so I’m not going to get to the other things that I want to ask you but I just appreciate all of your all of your input and your thoughts around that. Switching gears here. I did want to ask you what’s one thing in marketing that you’re working on right now that’s just consuming a lot of brain space for you? And what takeaways might you be able to share with listeners who are encountering that same challenge.
Kevin Williams 25:09
One of the issues, that pandemic has torn a cover off. And, shown, a very bright spotlight on is this issue of health disparities, the fact that some communities don’t have near as much access to needed health care services as others. And these underserved communities as a result have suffered disproportionately because of that. COVID allows our country and in our society to see that problem more clearly, particularly in the area of mental health services, where we’ve seen the evidence of underserved communities, whether they be communities of color, whether they be rural communities, whether it’s the LGBTQ community, that because of stigma, and other realities, these communities have not been able to access mental health resources that they need. And this has been exposed for our entire country to see. And as a result of that, our organization has committed to adding as one of our top strategic priorities, a commitment to diversify our audience, our audience of supporters, and more importantly, the audience, diversify the audience of those who need our services, who can make, access our services. And so we’re in the midst of work right now, to build partnerships with underserved communities, communities of color, to let it be known that our resources and our tools and services are available to them, are accessible to them and to make sure that we build upon these efforts, with culturally competent information, that’s going to build trust between DBSA and underserved communities for a long time down the road. Because our goal long term is that the DBSA becomes a trusted resource for all communities, because all communities experience individuals with a live condition of mood disorders, all of them have need of our services, and all of them deserve to have access to our services. And we’re committed to making sure that that access becomes more real down the road. We’re off to an encouraging start Spencer in that regard, in that, for our online support groups, it’s specifically during the pandemic, we not only expanded the number of online support groups, but within that, we added specialized online support groups to address some of our underserved communities. And a few months ago, we opened our first black community, online support groups attended by members of the black community, facilitated by professionals in the black community. And we are very encouraged by the response that we received, in the first couple of months that we’ve had these support groups active, they filled up quickly. And there are waiting lists of other individuals wanting to get in and participate. So we expect in the very near future to actually expand the number of black community online support groups, and that’s a great thing. And from there, our commitment is to add support groups that speak to other underserved communities, the Latin X community, LGBTQ community, and rural communities in the very near future.
Spencer Brooks 26:43
I can imagine that’s a very validating experience as well for someone in that underserved community to see something that’s for them specifically, because I do hear lots of conversations about reaching a diverse audience, but not as many conversations about creating something specifically for them. So I love that you’re doing that. It’s very encouraging to hear the response and a good lesson as well for listeners. I did want to ask you as well, Kevin, what two or three resources would you recommend to listeners who are trying to keep up on trends and news and nonprofit marketing?
Kevin Williams 30:10
There are a lot of innovative people in the market space that we learn from on a regular basis. And there are two that Spencer I’d like to share with your audience. Bloomerang TV is a series of video interviews, they’re conducted very on a casual basis. But I watch them because they they feature professionals in the nonprofit space, who discuss the hottest topics in marketing, promotion and advocacy for nonprofit organizations and I find the individuals that they interview, to be smart, creative, very innovative. And I think I’ve certainly sharpened my thinking, and improve my creativity by watching a lot of these interviews, I would encourage your listeners to check them out. That’s called Bloomerang TV. And then there’s the nonprofit mark community blog. Nonprofit mark community blog, and there, you go to that blog. And readers are able to pick up articles about marketing resources, about Tips, How To demonstrations, to more effectively promote and brand nonprofit organizations that they represent. A lot of good ideas, a lot of good content there. And I found both of these resources to be very helpful in my marketing efforts for DBSA.
Spencer Brooks 31:49
That’s so funny that you mentioned nonprofit mark community because I actually a few years back I actually wrote a guest article for them on how to select a digital platform. So, I can also vouch for Marlene, who’s behind that and that specific resource as well. So, it’s cool to hear someone else who’s read the same site. Yeah, that’s right. That’s right. I’ll put the links in the description below for anyone who wants to who wants to check those out.
Kevin Williams 32:21
Spencer Brooks 32:21
So, Kevin, I know that you’ve got a lot of stuff going on. Conference. I think that’s coming up. So go ahead I’d love for you to share with listeners what’s going on with you and how they can get in touch if they’d like to learn more about your work.
Kevin Williams 32:38
Absolutely, absolutely. So, yeah, I’d like to take a moment to mention that DBSA is holding its second annual leadership summit conference in late September: September 27 through October 1, the conference is entirely virtual. It’s our opportunity to bring together our entire community, peers, advocates, industry partners, funders and volunteers to learn more about how we as an organization can impact the conversation around mental health, how we can push forward new legislation and other new innovations that will improve the quality of lives for our peers. We’ve got a wonderful roster of speakers and presenters doing this. There’s going to be something of interest for anyone who’s interested in learning how they can make an impact and directing the conversation around improving life for peers at a variety of levels, employment, access to health care, housing, treatment by law enforcement portrayal in the media, variety of ways. And so, I want to encourage your listeners to look up information on our leadership summit conference. You can find that information on the DBSA website, which is dbsalliance.org. That’s DBSalliance.org. In addition to the summit itself, you’ll find other information on our website, which I think is going to be immensely helpful. Our newsletters, E update, which is a monthly newsletter, which goes out to our stakeholder community, provides tips on how they can advocate on behalf of mental health support by contacting their legislators. Our podcast, I’m Living Proof and several other podcasts are found on our website so that people can listen to the actual peers and have a better understanding of the actual lived experience of the peer. And for those who really desire to understand better, learn more, listen to the podcast, I can’t think of a better vehicle for doing that. And, of course, we are very visible and very prominent on the social media platforms, and you can follow us on Facebook, Instagram, and Twitter.
Spencer Brooks 35:29
Wonderful. And for listeners, I’ll make sure to include links to those resources, as well in the show notes so you can access all of those. So that’s wonderful. Well, that wraps up our show for today. As a reminder, we are a new podcast. So please consider rating and reviewing us on Apple podcasts or whatever platform you listen on. It’s a huge help for us and to get others who might find the show valuable to get it in front of them as well. What we’re doing here is also part of the thought education of Brooks Digital. We’re a digital agency for health nonprofits, and we help organizations create better health outcomes by treating their digital platform like a product and not a one time project. So if you go to our website at Brooks.digital, you can find more of our insights like this podcast and other articles and download our free report on digital benchmarks for health nonprofits. But with all of that said, Kevin really appreciated this conversation today. Thank you so much for coming on the show.
Kevin Williams 36:31
Spencer, it’s been my pleasure. And I want to thank you for giving me an opportunity to talk about the great work we do at DBSA and to connect with your listeners as well. I’ve really enjoyed the conversation.