Tony Mantor: Why Not Me ? - Seth Kahan's Journey Transforms Mental Health Advocacy in America

Episode Date: May 12, 2025

Send us a text Seth Kahan shares his journey from personal tragedy to leading a national movement against mental health stigma after his mother developed schizophrenia when he was 10 years old. His experience pioneering frameworks for grand challenges led him to launch Stop Stigma Together, a collaborative initiative uniting major mental health organizations to eliminate stigma around mental health and substance use disorders. • Seth's mother developed schizophrenia when he was 10, destroying his family and shaping his future work • The Stop Stigma Together initiative works with major mental health organizations and launched the "Love Your Mind" campaign with the Ad Council • Education works for reducing stigma in children, while adults need to see people like themselves managing mental health challenges • The SSTCommunity website provides free resources and brings together task forces focused on different aspects of mental health stigma • Mental health stigma exists in three dimensions: structural (laws/policies), social (interactions), and personal (private thoughts) • Seth overcame his own internalized stigma toward his mother through cognitive behavioral therapy • Policy work on mental health parity is crucial to ensure insurance companies treat mental health equally to physical health • Finding someone to talk to is the most important first step for anyone struggling with mental health issues If you need help with insurance denials for mental health services, visit CoverMyMentalHealth.org for free resources. For mental health crisis response alternatives to police, find local resources at TheRightResponse.co.   https://tonymantor.com https://Facebook.com/tonymantor https://instagram.com/tonymantor https://twitter.com/tonymantor https://youtube.com/tonymantormusic intro/outro music bed written by T. Wild Why Not Me the World music published by Mantor Music (BMI) The content on Why Not Me: Embracing Autism amd Mental Health Worldwide, including discussions on mental health, autism, and related topics, is provided for informational and entertainment purposes only. The views and opinions expressed by guests are their own and do not reflect those of the podcast, its hosts, or affiliates.Why Not Me is not a medical or mental health professional and does not endorse or verify the accuracy, efficacy, safety of any treatments, programs, or advice discussed.Listeners should consult qualified healthcare professionals, such as licensed therapists, psychologists, or physicians, before making decisions about mental health or autism- related care.Reliance on this podcast's contents is at the listener's own risk. Why Not Me is not liable for any outcomes, financial or otherwise, resulting from actions taken based on the information provided. Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.

Welcome to Why Not Me, the World Podcast, hosted by Tony Mantor. Broadcasting from Music City, USA, Nashville, Tennessee. Join us as our guests tell us their stories. Some will make your laugh, some will make you cry. Real life people who will inspire and show that you are not alone in this world. you gain more awareness, acceptance, and a better understanding for autism around the world. Hi, I'm Tony Mayator. Welcome to Why Not Me the World, Humanity Over Hankus, the Silent Crisis Special Event. Joining us today is Seth Khan. He is a renowned strategist and expert tackling complex global challenges.

With a background at the World Bank, an extensive experience, he pioneered frameworks for addressing grand challenges to tackle pressing global issues. Known for uniting diverse organizations and driving systematic change, Seth focuses on creating social movements and mobilizing collective action. He has such an incredible story to tell, and we're happy to have him here. Thanks for coming on. Well, I'm happy to be here. It's definitely an activity of passion of mine, so I appreciate being invited to the show.

It's my pleasure. Glad to have you here. So how did you get started in this? You and I talked about the grand challenge work that I do, and that's what got me to the mental health work. When I was a kid, when I was 10 years old, my mother developed schizophrenia. It was a game changer for my family.

It destroyed my family. It was in 1969. My dad didn't know what was going on. It was horrific for me. I was very close to my mother. She was getting her Ph.D. in special education, which, by the way, she continued to pursue and received as someone who had schizophrenia.

She got her PhD. Since it was special education for young kids, I was always the test kid. She dragged me around to all these things that she did. One of the great gifts my mother gave me was that I associate taking tests with my mother's love. So I have loved tests through high school and college. It did me.

It was a great boon. I mean, you know, I was always ready to take the test. I've gotten so close to her because of this relationship with her PhD. And then suddenly she was gone. and she was paranoid. She thought people were following us. I thought people were pumping gas into our apartment at night. She had audio hallucinations, visual hallucinations.

So for a 10-year-old, it was like the person I depended on to interpret the world for me was suddenly completely checked out. It was terrifying for me. My family fell apart. I moved out of the house at 16, was unsupervised through all my early adulthood. I never went back to my home. I never felt like my family's home was my home. When I moved out, that was it.

luckily my mother got good meds in the 90s and we had a really good relationship for the last eight years of her life. That seminal event, of course, is something I carry with me. It's part of my identity, part of who I am. Fast forward, I'm doing these grand challenges, big, bold goals that take on intractable issues. I get a referral to the CEO of the Huntsman Mental Health Institute because he wants to eliminate stigma across the country for all Americans, all 350 million Americans. Because of my own background, I said, well, I'll work with you pro bono and I'll show you how to do this. So we met once a week for an hour a week for about a year, and then he invited me to lead the initiative. I had never led a grand challenge.

I always support CEOs who lead grand challenges. Because of my background, I said yes. That was about four years ago. It's been one of the best choices of my life. So I'm the lead for Stop Stigma Together to eliminate the stigma around mental health and substance use disorders on a national scale. We work with all the major mental health organizations, a lot of little ones as well. We work with the Ad Council. We have a seven-year campaign going, and we're helping them to raise money to make it longer. The campaign is called Love Your Mind, and I can talk about that.

I hope that Love Your Mind will become like Smokey the Bear. It'll just be part of American culture. That's what my goal is. I think that's a great goal. Now, you use the word challenge. I think that's the perfect word. When you start these grand challenges, what are some of the same? of the challenges that you have to face. Well, the first thing is that you have to pull all the movers and shakers in a particular

space together face-to-face, not Zoom. And after the pandemic, that's a challenge because everybody's busy. Everybody's, I'll give you an hour, but, you know, you'll be getting on a plane and fly to a city and spend a night. And it's like the thing that was gratifying was that all of these people. So we're talking about the executive directors of, you know, American Psychiatric, American Psychological Association, Nami, all the things. these big organizations, they all understood why stigma has to be defeated. And they all had initiatives

to fight stigma. And they all felt like they were kind of at the end of what they could do on their own. It was a known topic. It had been around for a long time. Everybody was frustrated. And then suddenly mental health was popping up on the national conversation. Simone Biles, COVID, all of these things exacerbated, the stress people were experiencing or made them feel like they could talk about it. If Simone Biles can talk about it, I can talk about it. We started seeing mental health on the front page of all these newspapers all the time. So that challenge to bring them, to get them to schedule that time and show up was something we were able to overcome. And we had an amazing meeting in April of 22 with all these leaders.

So that was the first challenge. The big challenge I had was when I first started my podcast, I knew absolutely nothing about autism or mental health. If I heard the words on TV or radio, I just had my perception of what it is. I was totally wrong. Now, after doing this, I realize that education, understanding is the key to erasing the stigma. A big part of my learning is because of this podcast. Not everybody gets the information like I do unless they're dealing with it on a daily basis.

Then they have no choice. If someone sees a person having a psychotic event, they don't understand. this person might do something bad, but ultimately they're really not a bad person. It's their mind that's telling them things that they don't understand. How do we get the average person that doesn't have these issues to give some empathy by learning more about what it is? Autism and mental health is a perception. So how do we change their perception? Yeah. So what I've seen is research shows that for children, education works. You can teach a child about brain diseases, mental health, substance use disorders. For adults, in general, they need to meet somebody that's like them.

So like if I saw an ad, let's say an Olympic swimmer who's got mental health challenges and has overcome those, that's a nice thing, but I'm not an Olympic swimmer. But if I saw an ad for a 65-year-old white guy who worked as a consultant and he was dealing with alcohol use disorder or schizophrenia or bipolar, I'd watch that closely and I would be thinking, that could be me, that could be my friend. And all of a sudden, I'm having a different kind of experience. And we find that that decreases stigma with adults. If they can meet someone and have a positive experience, then that starts to change the way they think about things. There's one thing I just wanted to throw in here. You mentioned, you know, if someone has a psychotic episode, there's an organization that I've just

become aware of in the United States called The Right Response where you can go and get a directory of who to call that's not a police officer if you know of somebody who's having a psychotic episode. And you can find it on the web at the rightresponse.co. Just go there and there's a directory. You can look up your area. I think it's a great service that they're providing. It's free.

It'll route you to someone you can call. Yes, that's a great resource. One of the most common issues I hear is police do not have enough training. So when they come into a situation with someone that's autistic or having a psychotic event, sometimes things can get out of control when they really just don't need to.

It's easy for me to understand because, I mean, having grown up with my mom, I mean, she would have meltdowns regularly. And if you haven't been trained and you don't know what's going on, it's scare the hell out of you. If your job is to protect people, then you fall back on what you know how to do. I had a close friend who worked at St. Elizabeth's, which is a hospital here in Washington, D.C.,

that takes care of the same. seriously mentally ill. And he was assigned to the people who were known to be violent. He said, you know, when we have someone acting out inside the hospital, we've got these two big guys, and we've got these huge pillows. And these big guys will, like, sandwich them with a pillow, basically making sure that they don't harm themselves or anyone else until it's over. You know, and I thought, boy, that's the way you should be doing it, right? You know, it's like, just be gentle. Just care for these people. They're in trouble, you know, help them get through it. I love that story.

That is just a great way of handling it. I had a CIT trainer on. He told me a story that really tells it all about police. In some cases, they only have seconds to react. He uses this one video that shows this policeman that did everything by the book. Everything he did was absolutely correct, except this one time. He came in contact with a young man that he thought was high. didn't understand what he was going through and had all the appearances of being high,

except in this case, he was autistic. He eventually had him on the ground with handcuffs on. As luck would have it, his mother showed up, kept a very level head, explained to the officer what was going on, and everything wound up being okay. This is just an example of why we need more officers out there that can understand those type of situations with autism and, of course, mental health issues.

It's getting better. Unfortunately, change takes time, and when that change happens, it'll be better for everyone involved. That's right. And we do have pockets in the United States where the police officers are well trained, and they could be training other police officers.

So we do have places where they're doing the right thing, and we should be drawing more on those. It's just unfortunate that change is a very slow process. Yeah. Earlier we were talking about an online program that you were developing. Can you expand on what it is, what it entails, and what your hopes are for it? So we're building a community. We have an online website called sht dot community. Anybody can go to it just by typing those into the browser, sST for Stop Stigma together. Dot community. There's no fee involved. You just register and you're in.

And we're sharing resources there. We're sharing resources and we have different task forces. We have one in criminal justice where I've gotten my education around the kinds of things we're talking about. We have one for children, youth, and family. We have one for policy. I've never been into policy my whole life. Now I'm into it because I want to see mental health get the right policy changes. We have it for rural. Rural is where some of the highest incidents of suicide take place in our country. And there's other issues around isolation that come in. Workplace. We had a partnership with OSHA. They believe that a safe workplace is one that's mentally healthy, not just physically safe. we're working with them and other organizations like One Mind at Work, which is a great organization

that produces a lot of content that workplaces can use, as well as a report card if a workplace wants to do the right thing, but they don't know what that is. They can go and get assistance from One Mind at Work. So we have all these different task forces that are involved in this activity. Then we share resources. We have people working together. Looking at some of the other task forces, we have one on substance use disorders, we have one on marginalized communities, we have one on journalism, where we're teaching journalists how to write about mental health so that they don't spread misinformation. We have one on entertainment media because in Hollywood, they're interested in representing mental health and substance use disorders accurately, and they don't

have necessary information. They don't work with mental health specialists. So we have a bridge, and we have people who actually will spend time with a writer or a showrunner or a producer or an actor and help them with what they're trying to create so that they do a good job of portraying the challenges. That's a lot of great information. When you start a grand challenge, what's your process? Yeah. So it's, first of all, it's participatory, which means that you can't tell people what to do. You have to create it together. So it's very much a collaboration. So after we got all those leaders together in one room at one time, we share with them what our vision is and we ask who wants to be involved with it. The vision has to be something that everybody has a stake in. It's not always

intuitive. For example, another grand challenge I worked on is healthy, nurse, healthy nation to improve the health of America's nurses. The U.S. Army got involved because they saw the health of nurses as a national security threat. They said, if we can't take care of our warriors, then that's a challenge for us as a country. I never would have guessed that. Never. Nurse health being a national security threat? I just didn't understand that. We had Harvard Medical School get involved because they were doing the largest study of nurses' health, and they only had 8,000 nurses, and we were going after 4 million.

They said, if you'll give us your data, we'll crunch it. And that was huge for us. I never would have thought about a partnership with Harvard Medical School. So you try and pick a vision, and for us, it was stigma-free United States that everybody's invested in because you're going to ask them to do work, and you're not going to pay them for the work.

So it has to feel like they're moving the needle on their own goals, their own mission. So that's the first state. Then you involve them in creating a national strategy. So I got all these leaders together as they delegated staff. We built out, how are we going to do this? And then we have another event that's open to even more people. We have 300 people at this event.

And we asked them to kick the tires. Look at our strategy. What's weak? Tell us where we're going to fail before we start executing it. And of course, we're enrolling people in that process too, because if they're involved in criticizing our strategy, then maybe they'll be interested in implementing the improved version. version. And that's what happens. So it's very participatory. It's kind of like kneading bread.

You're always folding people back into it. It can be a challenge for some organizations because they want to move fast and they want to do that by telling other people what to do. And that drops participation. So you need to increase participation. That's the key. I think one of the most important things you said, it takes time. It won't happen overnight. With that said, what kind of time frame do you have in order to get the results? that you're looking for? Well, with the Stigma Initiative, I found this book, which I will read to you, this is available for free over the web. It's from the National Academies, and it's called Ending Discrimination Against People with Mental and Substance Use Disorders, published in 2016. And it said

it's going to take about 20 years to do this. I got the timeline from this book, but not all grand challenges are the same. So other grand challenges have different timelines. But for this one, we're talking about legislative change and changing the minds of Americans all over the the place. People who are informed, people who are not informed. People who are highly educated, people who have no education. People who live in cities, people who live on farms. I mean, it's like, you've got to reach everybody. So it's a long-term project. So we're shooting at 20 years, and we're about four years into it. Yeah, I think that's a good approach. If we look at autism, back in the 90s, there was still a lot of unknown about it. Now, we fast forward to today.

there's still a lot, this misunderstood, and the stigma still is there. We can look at autism and still see that it's not where it needs to be yet. Definitely a lot of it is improving. Now, if we look at mental health, the same thing can be said. So how do you tweak it or fine-tune it so that you can get the information out there and hopefully be on track to hit your 20-year goal? Yeah. First of all, I want to say that autism is included in our challenge. Oh, that's great. People who are artistic, many of them are mentally healthy.

They just view the world, they process the world in different ways, but there's still stigma associated with it, right? And so we see that as part of our challenge too, is we want people to have a different view of people who have autism. I think there's kind of three dimensions to something like this. And I would sit down with the folks who are steering the autism and ask them to kind of self-diagnose in these three dimensions. Okay, can you expand on that? First is structural. That's where you have laws and policies that perpetuate stigma, and we have that. So, for example, going over to substance use disorders and mental health,

if someone is living in affordable housing, they have a government grant so that they can afford a house, and they have a substance use disorder, and they relapse. They get kicked out of their house. That's stigma. You shouldn't get kicked out of your house. You should get help. You're homeless and you have a relapse. they're making a situation worse.

That law needs to be changed. And we're actually going through the laws of the state of Illinois right now to identify all the laws that support mental health and all the laws that create stigma. And we're going to give them a report card. We got funding through the Kennedy Forum to do this in the state of Illinois. And then we're going to use that report card and go to all the other states and do an analysis of their legislation. So that's structural stigma. And it's not just laws. It's also workplace policy or a place of worship.

policy. See, the thing is most people are not going to dig into trying to really understand the issue, but they are going to be interested in being compliant so that they can do their job without crossing any policy lines. Everybody wants to do that. That's why you've got to get into the policy, because all those people who are not going to think about it, but they'll do the right thing if it's written into their policy, you want them. And they'll do the wrong thing if that's written into their policy, too, and you don't want that. That totally makes sense. What's next on the agendas? Policy is one level. Second level, I'm going to give you three of these.

The second level is social. How are people interacting with each other? Anywhere people interact. In their home, in a shopping mall, in a church, anywhere. What are the rules for talking about mental health challenges? That's easy to see because you can see it in people's behavior and you can document it and you can give people report cards and they can adjust their behavior.

But then the third dimension is not easy to see. And that's what happens in the privacy of your own mind and how you think about it. And that has to be dealt with. So I'll give you a personal story for that. When my mother was near the end of her life, she was on meds for her schizophrenia, and she was doing very well. However, I still felt embarrassed by her because that is something that I had in my mind since I was 10 years old. Now we're talking about me being 45 years old. I still have it. I remember a dinner in my house with my father-in-law, and his partner and my mother and my wife. My mother was holding her own in the conversation.

She was very smart, but her hair was a little funky, and she'd spill stuff on her blouse, and she wouldn't clean it up. I was humiliated by her. That was all happening in the privacy of my own mind. My father-in-law and the woman who was his partner loved my mother. They even told me afterwards. They just enjoyed the conversation so much they loved to meet my mom. And my wife didn't have any issues with her.

Only me, in private, was having an issue. And so I actually took that into my own therapy because I felt like those thoughts about my mother were actually preventing me from loving her as much as I wanted to. That's an example of you have to go inside and ask yourself, how am I thinking about someone who has a mental health challenge? Yeah, yeah. That's a very good point. I appreciate you telling that story. It's a very personal one.

Was you able to get past that so you could look at your mother the way that you hope to? Yeah, I did with the help of my therapist who really helped me to examine my thoughts. and think about things in different ways and address some of the embarrassment that I felt directly, you know? I think that's really good. You was able to get past that so you could move forward with your life. Now, if you don't mind me asking, how did you get past that? I mean, this was embedded in your mind for a very long time.

How did you find that change so that you could breathe and move forward? Well, I had a lot of success with cognitive behavior therapy, CBT. And one of the things that that does is it asks you to examine your thinking and identify mistakes that you're making in your own thinking, like overgeneralization or black and white thinking. My mother's either healthy or she's not healthy. She's either good, she's bad. Overgeneralization is because my mother has stains on her blouse, that means that she's mentally inferior. That's not true, right? That's what's going on in my head. So I had to confront it and say, look, I have stains on my shirt sometimes. I don't know about. I know a lot of people have stains on their

clothing that I love, that I respect. So it's like, you know, so I had to bring that up and consciously say that to myself. You don't even know why she has those stains on her clothes. Maybe she couldn't get them out. Maybe she tried to get them out right before the dinner. I mean, I don't have any, any background or context. I might even go in there. And I should. Even if the stains are a symptom of her schizophrenia, the truth is, is that I love my mother deeply. And she gave me me, many gifts, and I can appreciate her when I'm with her. I can actively appreciate her when I'm with her. Yeah, that's just really nice to say. I think this story is just so good. It's one that a lot of people can relate to. Hopefully this story will resonate with people, and it can help them as well. Right. Yeah.

Now, you've started this grand challenge. It's been gone about four years now. What do you see in the next five years? Let's not go 20. What do you see happening to help you get towards that goal you're trying to accomplish? I see a couple of things. One is that I see some kind of activity that spreads around the United States that's like storytelling and story listening, where people have an opportunity to be candid and honest with each other in caring ways about the people in their lives who have challenges with their mental health. That's everything from mild anxiety all the way. way up to serious mental illness, right? It's everything from brain conditions where the person is perfectly healthy, like many of the folks who have autism, to people who have a brain that is in need

of something. It's an imbalance in there, like my mother's schizophrenia. She did really well with medication. So it's like I see some kind of an activity that's engaging, that's participatory, that's fun, where people have a chance to talk about their mental health and that spreads. So it becomes It's almost like a, in the old days, they call it a parlor game. It's like something you do with people, right? When my kids were little, we were trying to occupy them in the car. We play this game where, like, you say a word, and your word has to begin with the letter my word ended with.

So if I say fight, you could say together. Then I might say rat, and then you might say tomorrow. You know, and I guess it keeps going like that. Well, what was a game that was about mental health that was that fun, that easy, and that lowered the anxiety or stress around China? To me, that would get traction on the ground in living rooms, in scout troops, in community centers, you know. Yeah, I think that sounds like a really great idea.

Then I see the policy work really kicking into gear hard so that we change laws. One of the biggest laws that we have to work with right now is parity, which means that mental health should be treated the same way physical health is treated. So if you break your leg, you don't think twice about going to the ER. If you have diabetes, you get a professional. But if you have schizophrenia or serious anxiety, a lot of times you try and hide it. But if you go for help, the insurance companies are no help to you. They'll tell you, well, you've got three sessions.

Fix it. That's not how it works. So we need to get the insurance companies treating mental health like they treat physical health. In other words, providing the care that's going to take care of the human being. To me, that's part of the policy work. I see progress in the policy world in the next five years. Those are the two big things I was looking at. I believe that's a promising idea, though the challenge lies with the insurance companies.

While we might evaluate it from a policy perspective, they prioritize their company's financial bottom line. Right. That's right. There's going to be a lot of work, I think, about the fairness of that in the years ahead. I'm seeing a swell of activism about there's going to be small groups, grassroots groups, saying we need to be treated fairly by our insurance companies. And the implication is that they need to be treated fairly by our insurance companies. And the implication is that they need to, to be processing the health insurance in a way that supports people in getting the treatment that they need. Yeah, that's very, very true. What would you like to tell the listeners that you think is very important that they need

to hear about what you are trying to do? Well, one thing is that I would like people to think about their friends, their family, their colleagues themselves that could use some assistance, some treatment. And the most important thing, if you're really isolated or you haven't told anybody, is to find someone to talk to. That's like the most important thing. And it does not have to be a licensed professional. You can just start with someone you feel comfortable with. If you have a condition where you do need to be treated by a licensed professional, you'll get there.

But the beginning is really moving out of isolation. That means a friend, a family member you trust, someone that you can open up to about what you're facing so that you're not in it alone. That's probably the biggest thing that I would say. And then in terms of stop stigma together, come to sht.comunity, sign up and start checking out the resources that we have if that's of interest to you. One of the things that I think is really helpful there is that if you're a small mental health service provider, you can get resources like advertisements or television shows or how-toes from other larger organizations for free so that you don't have to spend the money.

and you can be confident that what you're getting is evidence-based, it's going to actually help you in your work. Those are some of the big things. Yeah, that's tremendous information. I've had the opportunity to speak with several people that have had mental health issues, drug issues, just all kinds of things all across the board. The common thing that they said is it took them 10 years

to get their life back. We just have to find a way that we can get help for them, and then they can be on a good, steady course to get back to a life that they've always wanted to live so that that way they can thrive. That's right. I think that's key for every human being. You should be able to live the life you want to be able to live. I like the way you said that. There's another resource I just want to throw out because it was related to what we're saying,

and this is not my organization, but I find these organizations because of my work. Covermymentalhealth.org. If your insurance company is denying your claims or putting up eyes, obstacles to necessary mental health services, you can go to cover my mental health.org. And there are so many resources there, like templates for letters that you write to the insurance company, the process for challenging the denial. And it's free to people who are in this situation. Covermymentalhealth.org is a great resource for people who are fighting the insurance denials. Yeah, that sounds really good. Well, this has been great. Good conversation. Great information.

Thanks for coming on. I've enjoyed it. So do I. It's been a pleasure to meet you, Tony. I appreciate all that you're doing. Thank you for the podcast that you're doing in addition to your professional work as a musician. I really appreciate it. It's been my pleasure. Thanks again. Thanks for taking the time out of your busy schedule to listen to our show today. We hope that you enjoyed it as much as we enjoyed bringing it to you.

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