THE HUMAN COST

'Serious Mental Illness, Family & The Fight For Care'
Exclusive Interview with Gail Freedman
Featured in 'Innerviews'
Hosted by Allié McGuire

In the film No One Cares About Crazy People, director Gail Freedman invites us to look directly at the crisis of severe mental illness in America, not through statistics alone, but through the deeply human stories of those living inside it. Inspired by Ron Powers’ acclaimed book of the same name, the film confronts stigma, silence, and the systems that have failed too many families for too long. With honesty, urgency, and humanity, this documentary asks us not only to witness what has been overlooked, but to care enough to change it.

ALLIÉ: Gail, let’s begin with the title of the film: No One Cares About Crazy People. It is difficult to hear, and I imagine that is part of the point. As a director, how did you approach holding the weight of those words while creating a film that is not about judgment, but about humanity, urgency, and care?

GAIL: The title is politically incorrect, to be sure, and intentionally provocative. As you know from having watched the film, it is the same as the title of Ron Powers’ amazing book. The title, which we explain in the first minute of the film, comes from a quote from a craven politician.

What helped me hold the truth of that was the desire to engage people with that notion. In point of fact, we try to show the inverse of that. We show that there are people who care. It is not just the families. Increasingly, I think, it is a broader swath of our society, the huge challenges we live with notwithstanding.

​Living in that caring space is what grounded me in the process. Obviously, this is a really intense subject. We followed some stories in real time without knowing what their ups and downs were going to be, and those turned out to be remarkably intense. Holding on to that caring notion helped me get through.

​ALLIÉ: One of the most heartbreaking truths in the film is how many families are forced to become advocates because love alone is not enough to keep their loved ones safe. What did you learn from families like Mark Rippee’s, Miles Hall’s, Danny’s, and Kevin’s about the cost of caring inside a system that so often fails to care back?

GAIL: In many ways, that is the heart of the film. I do not know that it is necessarily where we began. This began with me being inspired by Ron’s book. The family aspect was something I learned about during the research phase, and it fascinated me.

Whether it is in our own family, a distant relative, a neighbor, a friend, a classmate, or a coworker, there are no degrees of separation. This issue affects all of us in our lives. That seems self-evident, and yet it was one of the greatest surprises over the five years it took to make this film. I really learned that firsthand.

There is sometimes this notion of, “Where is the family? How did the family let this person get to this point?” Then you come to learn that not everyone has a supportive family. Some people are struggling and suffering alone. But in more cases than not, there are incredible relatives who have been struggling and suffering right along with their loved one, trying to do heroic work in the face of a system that often seems to conspire against them.

That takes an incredible toll. It also makes people strong and fierce. It turns them into warriors and activists. Mark Rippee’s family is a case in point. I do not think they ever expected to be working in this space, fighting not only for their own relative, but for everyone who lives with these illnesses, sometimes called no-fault brain disorders. They are still doing that work.

It is hard enough to be a full-time, or close to full-time, caretaker for someone in your own familial orbit. But to then do that work as an activist on behalf of others as well, draining does not begin to cover it. There is a toll on one’s own physical, emotional, and psychic health. There is ongoing stress, trauma, worry, and a feeling of failure.

As one family member says in the film, this is an illness that affects everybody in the household, down to the youngest one. It also affects the quality of relationships. In her case, it is her husband who lives with severe bipolar disorder, and they have young children. Their marriage has taken a big hit.

They sometimes come with us to screenings, and we had a screening in New York in April. Someone in the audience asked, “What do you think is the most important thing you want people to take away from this film?” Carmelo, who lives with bipolar disorder, answered. It was not his wife who said this. He said, “I want people to understand how hard this is on a marriage.”

He knows. To live with the toll of that, to keep going, to keep the love flowing, and to try to maintain some kind of optimism and hope is a huge task. It is a toll on the person who lives with this, first and foremost, but also on anyone who cares about them. Anyone who has ever had a loved one with any kind of illness, whether it is a spouse, child, sibling, or anyone else, can relate to that.
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ALLIÉ: There is a lyric in the song for the film by Jeff Tweedy that stayed with me: “I’m not well. I can’t tell.” The film speaks so powerfully to the catch-22 of severe mental illness, especially when someone may not know they are ill because of anosognosia. For those unfamiliar, anosognosia is a neurological condition in which a person is unaware of their own illness. How do we begin to have a more honest conversation about rights, autonomy, treatment, and protection when the illness itself can prevent someone from recognizing that they need help?

GAIL: That is a huge conversation, one that could probably take up more time than we have today. It is a question that comes up a lot, and one that, early on, took me unawares. I was not familiar with the notion of anosognosia when I began. It is an unpronounceable word, and we need some kind of shorthand for it.

The understanding of it as a concept has been around for a long time. Initially, it was applied to people with strokes and other conditions. We now know, even though some find it controversial, that it also exists in a significant subset of people who live with severe mental illness.

​It is not denial. It is a different situation. It is literally a feature of the illness that the person does not know. So why would you go into treatment? Why would you take drugs that have side effects or possibly become an inpatient and be traumatized by that? Why would you put yourself through that if you are not sick?

That conundrum is difficult. If you had asked me early on in this process, as an old lefty progressive, whether anyone should ever be treated against their will, I probably would have said, “No, of course not.” Then you start to dig deeper. You start to look at nuance. You start to realize that it is not one size fits all.

We can all get into our philosophical silos, but that does not begin to tackle this question: Why are we applying a different standard to someone who has schizophrenia, schizoaffective disorder, or severe bipolar disorder than we would apply to someone in the middle of having a heart attack, a stroke, or a severe episode of dementia?

We would reach out and help that person. Yet somehow, with the great intention of preserving people’s civil liberties and personal agency, which are very important core concepts, we leave someone untreated, unhoused, suffering, possibly suicidal. We give them permission to destroy their own life under the guise of caring about their rights and freedom. That is a complex, thorny, difficult conversation. We did not start out planning to engage with that, but it became inevitable.

Mostly what I have heard from screenings is that people come away with an increased understanding that we do need to have a different kind of conversation. Is the solution to say that someone can only ever choose their own treatment? Or is the solution to improve the systems of care so that we do not traumatize people if it becomes necessary, in some cases, to help them get to a point where they can reassert their own agency and dignity?

Voluntary care is clearly better. That is the preferable outcome. That is what we all want for ourselves. But how do we help somebody who may desperately need help and not know they need help? How do we improve the systems?

Instead of saying no one should ever be inpatient, or there should never be locked units, I think we need to ask: How do we make those systems of care better, more humane, and more effective, so they are used minimally? Right now, the systems of care we have are woefully inadequate. Some things are getting better, and some things are getting worse.

​ALLIÉ: There is a line in the film that says, “There is not a breakdown in policing. It’s a breakdown of the mental health system.” From 988 to CARE Court to broader policy reform, where do you see the most urgent opportunity, not just need, but opportunity, to replace crisis response with actual care?

GAIL: I do not know that there is a single answer. You just enumerated several entry points where people are trying to change the system. I think it is both-and rather than either-or. There will always be crises and emergencies, and we do need to change the way we address those. It is easy to badmouth the police. As you saw in the film, there are certainly incidents where the police response has been tragic. But this is not a job for police. Police did not sign up to do this. Even when they have training, it is not sufficient. This is not a job for police.

Occasionally, there may be situations where someone from law enforcement needs to be present, but we need people who are trained, who have empathy, who understand, and whose work this is to be the ones who show up. That is one level. But we also need a whole continuum of care. I think that is where there is opportunity, if we can decide as a society that we have the will and are willing to commit the resources.

On a national level at the moment, things seem to be moving in the opposite direction. But at the state, regional, and local levels, there are places trying to do that kind of soup-to-nuts overhaul. We spent a lot of time in California, and they are trying. We will see how effective some of it is. The report card is not in yet.

How do you provide continuity of care so that, as advocate Teresa Pasquini says in the film, somebody gets the right care at the right time in the right place? How do you provide that whole continuum? For someone who may need to be an inpatient for a time and then step down, what do they step down to? Is there a step-down facility available? Is there adequate housing? Not just housing where someone is free to come and go but falls apart quietly behind their own four walls, but housing that comes with support, services, and caring human beings.

That notion of purpose, place, and community is key. I think we are understanding those needs better. There is a lot of opportunity, and there are more evidence-based practices. The challenge is whether we decide, as a society, that this is a priority.

COVID made people more aware of mental health struggles than perhaps ever before, especially with young people. That awareness has hung on. But for those who live with the most severe disorders, they got short shrift before, and they still do. They are the toughest cases. It is like doctors who do not want to treat the very sickest people because they like success and do not like failure.

​ALLIÉ: When my sister was diagnosed with multiple sclerosis, I quickly became aware of the ripple effect of diagnosis. Yes, she was diagnosed, but there were so many of us affected: her sisters, her children, her parents, her friends. When I was diagnosed myself with MS, the circle of impact rippled even deeper and wider.

In the United States, there are about one million people living with MS. In your film, you share the powerful fact that there are 14 million people living with a serious mental illness. For every person living with serious mental illness, there is a circle of impact that includes families, friends, caregivers, communities, police officers, policymakers, and healthcare providers. Given the size and scale of this crisis, how do we begin to battle these ripples of systems that have become waves of failure for so many in need of care?

GAIL: It starts with awareness and understanding. Things can change, and things do change, but it begins with understanding. It begins with getting people to look in, not look away. People often ask me at screenings, “What is the one thing you want people to take away from this?” I always say, “I am not a professional advocate. I am a storyteller. But what I want is this: Look in. Don’t look away.”

Making this film transformed me. When I ride the New York City subway and there is somebody in the next car who is clearly in the middle of some kind of episode, I cannot look away the way I used to. A film allows people to begin looking in a safer way. There is an undeniable fascination, too. We have always been fascinated by madness. There are characters in fiction, literature, and film that draw us in. But when it is in real life, it becomes scary and terrifying, again because we are all affected by it, even if it is not us ourselves.

If we can get people to pay attention, to look, to understand, and to begin to feel compassion, that is step one. I also think there is a head of steam behind some of the advocacy that is going on now. On good days, I believe that maybe we are at a tipping point. There is more understanding. There is more pressure for change. There is this army of advocates, in many ways led by family members and caregivers, along with a handful of brave politicians.

​That 14 million number includes the most severe illnesses. There is an even bigger number if you factor in anxiety, depression, and other kinds of suffering. Suffering is suffering. But when we look at the most severe disorders alone, it is a huge number.

I think change is possible. With AIDS, with breast cancer, with a whole series of other disorders, there have been movements that built public understanding, acceptance, and a desire for change. Whether that comes from compassion, which we hope it does, or from people seeing this in evidence in every city and town, wherever they live, I think that is how we start to make change.

It is always going to be a struggle. The fierce advocates have to keep being fierce, loud, and proud. We cannot just throw up our hands and say this is not possible.

​ALLIÉ: Documentaries like yours are so important because they help people see themselves in someone else’s story, a story that could one day be their own. Mental illness does not discriminate. We do not choose it.

Caring and compassion can seem proximity-based. If we are not close enough to it, if it does not touch us, we can pretend it does not affect us. But what affects one of us affects all of us, or it should.

I do not have serious mental illness. My husband does not have serious mental illness. None of our six kids do. But I felt the pain of every single mother and wife in your film. I cried with them. I shared moments with them through your film. Your film gave me that gift because I am a mother and because I am a wife. Thank you for helping me, and so many others, see and feel that pain so that we may be part of a solution and not perpetuators of the problem.

GAIL: Thank you so much, Allié. That is beautiful, and I really appreciate it. This film is not an easy watch, but people come to it for a lot of reasons. I am gratified that we are reaching people beyond what I expected. We have been selling out screenings, and we have just begun our streaming launch. We are told that, at least in the first several weeks, we are one of the best performers, which I find astonishing.

This is not a popcorn movie. But it was very intentional for us to try to leave on a note of hope. We did not want to be only doomy and gloomy. There have been a number of good films in this space, and I made it my business to watch a number of them when I took this on. But many of them made me feel hopeless. I did not want to leave people with that. I wanted to leave people with a sense of possibility, optimism, and hope.

If we do not have hope, what do we have? If these individuals who live with this, and if their families, can keep going, keep laughing, and keep the faith, then we can too. ∎

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Learn more about No Once Cares About Crazy People:
noonecaresfilm.com
Now streaming on Apple TV & Amazon:
noonecaresfilm.com/now-streaming