The essay "I Am Adam Lanza's Mother" went viral after Adam Lanza went on a shooting rampage in Newtown, Connecticut, in 2012. In that essay, writer Liza Long, who's based in Idaho, revealed that she was fearful of her then-13-year-old son, who she said sometimes became violent and threatened to kill her. Since then, Long has become an advocate for families dealing with mental illness. She was in Massachusetts Friday addressing the Parent/Professional Advocacy League. WBUR's Deborah Becker met with Long and asked her what, if anything, has changed in her family since she wrote that very personal post.
Liza Long: I'm in a very different place. By speaking out, by my sharing my story, I was able to consult with a doctor. We got a diagnosis for my son. He was re-hospitalized again a month ago, in May, where he was diagnosed with bipolar disorder. And that diagnosis, after more than eight years of struggle, of pain, of frustration and even fear, I have my son. His moods have been stable on Lithium. He has not threatened harm to self or others in more than a year. He plays soccer now, and he's headed to a mainstream high school next year. And for me to say those words, that in my family is a miracle. A year ago, I didn't know what our future held. But whatever it was, I didn't think it was good.
Deborah Becker: You got a lot of criticism for that---mainly going public. I know you didn't use his real name, but folks said you were compromising his privacy and that can follow him around. He's young now, but what do you say to those folks who say you may have compromised his privacy here, and should you have done that?
I think, first and foremost, that privacy is an important concern. I took those concerns very seriously. The real challenge here, though, is when we talk about privacy with mental illness, what we're actually talking about is stigma---because if I had written about my son having cancer, I don't think I would have had those criticisms. What both my son and I feel we have to do is shift the conversation to a place where it's OK for everyone to talk about mental illness in the same way that they could talk about cancer.
Do you have any regrets?
If you had asked me that question six months ago, I would have had to honestly say yes. And I don't talk very much about why I would have had to say yes, but it involves that a judge in Idaho determined that my two younger children were unsafe because of my son who had mental illness, and I lost my two younger children for a period of time. I hugely regretted what I had done. I can't get that time back with them. As we look at the wide number of families who are able to talk, who are able to share their stories, we have moved beyond regret to the feeling that maybe we said something important. I think if people don't criticize or challenge you, you probably didn't say something that needed to be heard. I touched a nerve.
Liza, you're here in Massachusetts today to speak with the Parent/Professional Advocacy League, which advocates for children with mental health needs. And your visit comes after we've had another mass shooting---this one at the University of California at Santa Barbara, or near it, anyway. And so I wonder what you're going to be telling the group here today and how it might have changed because of that recent tragedy.
That's the real tragedy of this situation, is the message hasn't changed at all. The message is the same. It's that our mental health care system is broken. It's not helping families. It's not helping communities. Elliot Rodger's family tried to get help for him. They knew there were problems with their son. And still, they couldn't get him in treatment. If a rich Hollywood family can't get their son the treatment he needs, who can?
What is most important in this process right now, would you say, in terms of trying to address this problem from the legislative level in Congress?
There's a bill, HR3717, and I have blogged in support of this bill. People are opposed to it for a variety of reasons. Opposition groups say that it requires forced treatment. And what they're referring to is the assisted outpatient treatment provision that's in the bill. What assisted outpatient treatment does is it gives us a last stop, a safety net, so that we can treat people in the community instead of having to treat them in jail. And people have said, "Well, but they don't have choice about that treatment." But we have to look at the illness and say, "Do they have choice at all?"
But it is difficult to draw that line as to where somebody's civil rights are, and whose interpretation of their illness is correct. So that's very, very tough. And I believe the standard now is someone has to present a danger to themselves or others to have to go into treatment. And this would essentially remove that standard?
You could not put a person into treatment if there had not been numerous attempts to already get treatment for the person. But you really identified one of the challenges with mental illness by talking about the difficulty in diagnosing. That exists today. So really when we look at this problem, sure, we've got the legislative component of it, where we could do a much better job of making sure that people---children, families---get the care that they need. But on the other hand, we also have to do a better job of diagnosing these disorders in the first place. There's a lot of promising research out there.
This segment aired on May 30, 2014.