Mental Health Care Advocates Are Drawing on Lessons From Marriage Equality

Zak Williams, son of the late Robin Williams, and Bill Smith are fighting to expand mental health care access

Nearly half of Americans say the pandemic — and its combination of isolation, fear, and uncertainty — has harmed their mental health. And just as the virus has pushed our health care system to the brink, many experts are worried about our ability to confront recent surges in mental illness.

I spoke with Zak Williams, the son of the late comedian Robin Williams, and Bill Smith, who lost his brother to mental illness two years ago, about Inseparable — an organization they created to erase negative stigmas surrounding mental health. They tell me about the changes they hope to see as we slowly recover from this global crisis.

Katie Couric: Tell me about your organization, Inseparable. What exactly is it?

Bill Smith: We started Inseparable based on a pretty basic premise, that the health of our minds can’t be separated from the health of our bodies. For too long, mental health policy has been an afterthought. We want to create and build a movement to force the system to change, and allow all Americans to have easy and affordable access to a functioning mental health care system.

Zak, how and why did you get involved with this particular organization?

Zak Williams: When Bill and I started talking, we realized that we both take a systems approach to implementing change. What that means is that you look at the various constituents of a system and understand how they interact with one another, and then apply resources to different constituents to create meaningful, systematic, lasting change. There’s an expansive need to provide enhanced access to high quality and engaging mental health care for all Americans. That was something we both agreed upon, so it made sense to work together.

I think that access seems to be the operative word. It seems that mental health care is the province of the wealthy, and that mental health care professionals are not only hard to find, they are often not affordable for most people. Can you address what you think some of the biggest obstacles are to breaking this barrier down and making these services accessible to more people?

Zak: We look at access to care in three different categories. The first is parity. There was a federal law passed that says you have to treat mental health the same way as other types of health. But right now if you went to the emergency room and you had a heart attack or broke your arm, they wouldn’t say come back in three weeks, in the way they might if you needed to see a mental health professional.

The second piece is that we think it needs to be able to integrate this into primary care. So when you go to your doctor, or any health care provider, they should talk to you about your mental health as well as your physical health — that should be standard.

The last piece is the workforce. We just have far too few mental health providers in the country. I think we have something like 6,000 pediatric psychologists for millions and millions of children. And if you don’t have access to a mental health care provider who speaks your language and understands the culture that you come from, then you don’t really have access at all. The lack of access creates a pretty giant gap between those who need treatment and those who are able to get it.

Zak, how do you think the Covid-19 pandemic has accelerated this need for better health care services?

Zak: Well I think the coronavirus pandemic has intensified existing mental health considerations. So if you’re self-medicating, or if you’re addicted to a substance, this period could certainly exaggerate addictive behaviors. Any feelings of depression and anxiety will certainly be exaggerated if you’re experiencing isolation. So we see it as a parallel pandemic in the mental health advocacy community. There seems to be a shared trauma stemming from this epidemic, as well as the protests that are going on in our country and impacting so many Americans. Prejudice and bigotry play a part in the stigmas against mental health as well. It’s crucial that we provide enhanced access for anyone who needs it. Because the needs of Americans coming out of this are going to be extreme.

I think it’s so noble, what you guys are both doing and this whole effort by this organization. Can you take us through the steps that you think need to happen to create the systemic change?

Bill: I spent a lot of time working on the marriage equality movement. We gained two major takeaways from that. You need to figure out how to change hearts and minds, and you have to move people. And the second point requires building political power. There is not a family in this country that is not touched in some way by the issue of mental health. I’m from rural Alabama, and I know lots of very conservative people who have mental health issues just like liberal people. There might be differences in how people talk about and approach mental health, but I think everybody is concerned about it in one way or another. I don’t know a person in this pandemic who hasn’t experienced anxiety or depression in some way shape or form.

Part of the strategy we’ve been putting together is that we want people to join us in demanding a better system of care, one that doesn’t just include access, but includes prevention programs and early intervention. One of the other organizations Zak works with, Bring Change to Mind, works at the high school level with peer to peer support. There’s another group called Active Minds that does that at the college level. What’s interesting is that younger people seem more willing to have these conversations, but they also want to see change. They want to change the system. I think we’re creating the next generation of activists who want to build policy reform as well as look out for their friends.

What are the priorities and goals of your organization?

Bill: This summer as we look at if there will be another aid bill during recovery from the pandemic, we’re going to have to urge lawmakers to stop leaving mental health services out of the conversation, because so many people have dealt with mental health crises during these past months. When you look at the state level, we know that state budgets have been dramatically impacted by the loss of tax revenue that’s come with the pandemic and the recession. But we have to say: Do not balance your budgets on the back of mental health care. There is the potential for a lot of long-term issues here if we don’t speak up now.

We want to utilize all of the tools we have at the state and federal level to demand access around parity, especially when people are already paying for mental health coverage but not getting it. We will encourage investment in prevention and early intervention programs. There are a lot of terrific programs out there, they’re just not being funded to scale. At the federal level, the government spends quite a bit of money on research towards mental health, but it’s not entirely connected to what frontline providers say works and what doesn’t work. We want to reform the way we invest in research. The last big piece is that we need a long-term national plan for mental health.

Zak and Bill, you’ve both had profound personal losses which I imagine motivated you to get involved in this cause. Zak, I loved your dad Robin Williams so much. Can you talk a little bit about how your personal loss caused you to focus on this issue as one of your missions in life?

Zak: The personal loss I experienced when my dad died by suicide is not a unique one. It’s something that was shared by millions of Americans and people throughout the world. It was traumatic, and I had episodes of extreme anxiety and depression. It became apparent to me that I couldn’t continue living the way I was living, because I felt numb. I was not experiencing the world.

The thing that I found to be extremely helpful and fulfilling for me was a dedication to service — finding and supporting mental health organizations, because of both what I experienced and what I know my dad experienced, over the course of his life. Sharing my experience and applying my skills to support these initiatives was very healing and restorative.

I hope that people are compelled to support mental health causes without having to go through a traumatic event like I did, and of course I hope that those that do are able to find support and solutions. It was a catalyst for me that led me down a path of service, and I think this is something I will be doing for the rest of my life. It has enabled me to find strength in vulnerability. This needs to be discussed on a national stage — how we can share our stories and find resilience in them, especially at a time like this.

Bill, tell me about why you decided personally to invest your time and energy into this cause?

Bill: Two years ago this month, I lost my brother to suicide after a really long struggle with mental illness. It was devastating to our family, in the way that it is to millions of families that lose a loved one to suicide. I experienced ways in which the system was broken, and it made me really dig deep to figure out what I could do to make a difference.

One of the many things I loved about my brother is that he was a writer. He wrote regularly about his struggles with depression because he thought he could help other people by sharing his story. There’s so much power in that. I was so proud of that. Part of the way to honor him, and all of the people we’ve lost, is to be advocates — to stand up for our families and friends and not just tell their stories, but to demand change, so more families don’t have to suffer in the way that so many already have.

Bill, what other elements of this movement are shared with the marriage equality movement that you worked on? How do you see that as a template for how you want to usher in changing attitudes and policies around mental health?

Bill: One of the successes of the marriage equality movement is that it was about love and taking care of each other. It sparked a huge conversation about what we value. That’s one of the things we have to do with mental health. There had been a lot of stigma for a long time about talking about marriage equality and LGBTQ rights, so I see a lot of parallels with mental health stigma and institutional issues. The other thing we’ve been talking a lot about is how we deal with this in the political systems. It’s about building political power to make change happen. I think that’s something the marriage equality movement did a great job of. They used as many tools in the advocacy toolkit as they needed, to win. That’s what we’re trying to do here.

This interview has been edited and condensed.

This originally appeared on Medium.