Doing Justice to Mental Illness
Doing Justice to Mental Illness
Rev. Anthony Makar
Jan. 11, 2015
So I want to tell you a little about my Mother. The quickest way I can invite you into her life is by sharing a dream she had repeatedly over the course of many years. When she shared it with me, it helped me to appreciate the journey and challenge of her life in a new way. She certainly knew it was one of those big dreams people have which come like nothing else, with the force of undeniable urgency, to tell the truth the way only big dreams can.
In the dream she would find herself kneeling on the ground and wanting to rise up, stand up on her feet, but she couldn’t, she wasn’t able to, because an invisible and unknown pressure from above was holding her down. And that’s the dream. It was always the same sequence of events. Always ending with her trying to get up, but not being able to. The last time she told me about this dream, she looked at me with her big beautiful eyes, and I felt so helpless.
Hers was not an easy life. People would call her up on the phone, invite her to lunch, to chat, but she would say NO. So many friendships could have been possible, but Mom was self-isolating. She just wanted to be alone, and was stubborn in this. “It’s hard being around people,” she’d say. She would open up to her sons, but to few others.
The pain she carried was immense. Being with her was like a desert experience, wind whipping up the sand of her emotions, and the sand would get everywhere: in your eyes, in your mouth. Mom was the kind of person who nursed resentments. She would remember a slight from decades ago, and she couldn’t let it alone, would talk herself into the memory until the old emotions flared and took on explosive life. She could get enraged. Screaming angry. Her beautiful face all red, bulging veins in her elegant neck. One moment I am her “precious darling angel” (her words) and then the next, in a completely unpredictable way, she is telling me she hates me, how she wished I had never been born. She was unstable in her relationships with others and especially with herself. She looked to drugs to help her cope. There was depression, eating disorders, obsessive-compulsive behaviors, suicidal ideation. It was so very hard growing up. Mother’s Day is a difficult day for me.
Only much later did I put all the pieces together to see that she was a person with a mental illness: borderline personality disorder. She had seen doctor after doctor, but there was misdiagnosis after misdiagnosis. And then there was the terrible stigma of mental illness, which wounded her proud spirit and caused her to avoid treatment as far as possible. Dad enabled this because he was equally proud and equally stung by the stigma.
This was the pressure from above holding her down. Why she could never really stand up.
My mother graduated from the Edmonton General Hospital School of Nursing in 1962 and was inspired by its vision statement which said, “Together, we are summoned to be vibrant and compassionate signs of hope in our broken world.” That was her ministry, preceding mine. One day on the job, Mom happened to see a young boy being prepped for surgery. He looked so frightened and alone. Mom went over to him and took him in her arms, and loved him, asked him what his name was. The boy said, “Anthony.” She said to herself, “If I ever have another son, that’s the name I’ll call him.”
This is her story, and it is equally my story.
So many of us share similar stories of love and pain.
One UUCA congregant tells me about her son, who was diagnosed just recently with bi-polar with a dominant manic component, after years of living with a misdiagnosis and all the trouble that has caused. The misdiagnosis was adult attention deficit disorder (AADD), which resulted in mis-medication with drugs that only made the mania worse. She says that this particular misdiagnosis may be fairly common, since AADD has become a “popular” diagnosis, one that does not carry the stigma that bi-polar does, and therefore is aggressively promoted by the pharmaceutical industry. She says, “We lived through (as did has wife of less than a year) a major behavioral and psychological crisis as he self-medicated with too large doses of his AADD meds as well as alcohol—all this to handle his run-away anxiety, work crises due to his mania, rising debt due to spending during mania episodes, and fear of losing his job.” Just listen to all the issues here, the ones explicit and the ones implied!
We have, in this beloved community, so many stories of love and pain. They are more common than cancer, heart disease, and diabetes. One in four adults (approximately 61.5 million Americans) will experience a mental disorder in any given year. In any given year: approximately 20 percent of youth ages 13 to 18 will have this experience, and of children ages 8 to 15: approximately 13 percent.
Just look around you. Just think about what I’m saying.
There is no one kind of mental illness, I hasten to add, although if there is anything the various kinds of mental illness hold in common, it’s this: (1) they manifest as alterations in thinking, mood, and behavior which are not signs of moral weakness or irresponsibility but are like asthma, or a broken arm—they rooted in brain chemistry imbalances, or something physiological; (2) the result is distress and or/impaired functioning; and (3) the people who have them (and the families who love them) face overwhelming prejudice every day, on both personal and social levels. That’s what the various kinds have in common.
And what are these various kinds? There are mood disorders, like depression and bipolar. There are anxiety disorders, like panic attack, obsessive-compulsive disorder, post-traumatic stress disorder, agoraphobia. There are psychotic disorders, like schizophrenia. There are eating disorders, like anorexia and bulimia. There are personality disorders, like narcissism or borderline personality. Many of these co-occur with some form of substance abuse or other.
One kind of disorder that doesn’t comfortably fall under the category “metal illness” but also results in significant impaired functioning are the degenerative brain diseases—one of which is known as Alzheimers. It impacts millions of families, including families right here. One of these families includes longtime member Ortrude White, whose story was featured in the Atlanta Journal-Constitution back in 2012. So grateful to her and to her husband Myles for their willingness to share their story publicly. “Ortrude White, a Harvard-educated architect,” says the article, “wears a silver bracelet on her left wrist engraved with her husband’s telephone number. White won’t leave her home in Inman Park without it. At night, she leaves it by her bedside table. For months earlier this year, a recurring nightmare filled White with terror. The jumbled scenes repeated themselves: She stood alone, surrounded by walls, trees, buildings she didn’t recognize. The bracelet ended the nightmares. On mornings she feels foggy, she grabs hold of it. Two and a half years ago, White’s brilliant mind started unraveling. The woman who depended on figures for her livelihood could no longer add or subtract. […] White struggled. She had trouble connecting the dots on a sheet of paper. Counting backward by sixes in timed sessions was difficult. She puzzled over drawing the hands of a clock, a tell-tale sign of Alzheimer’s…” The story goes on from there.
It’s our story. Ortrude and Myles are us.
But now, recall the mission words from the hospital my mom got her nursing degree from, way back in 1962: “Together, we are summoned to be vibrant and compassionate signs of hope in our broken world.” Besides simply breaking the silence around mental illness—besides just saying that it’s real and it impacts all of us in one way or another everyday—this is what I want to talk about: doing justice to it. How to be signs of hope. How to be bringers of hope.
Back when I was a teenager, a bringer of hope in my life was my pastor. Pastor Dan Manual of Crocket Road Church of Christ. We didn’t talk about mental illness as a church community, but my pastor, he cared. He knew my family and felt a special connection with my Dad. On two or three occasions when things got really bad (as in Mom had locked us out of the house, or she was particularly vicious and violent), he had me and my two brothers spend the night. Safety in a warm bed. In the morning we awoke to the revelation of a family at peace, sitting together around the kitchen table. Toast and jam. Eggs. Orange juice. Prayer to begin the day. Today I am light years away from my pastor’s theology, but the theology of a warm bed, the theology of a family at peace sitting around the kitchen table, the theology of toast and jam and eggs and orange juice: this is theology I can get behind and proclaim again and again and again.
Thank you Pastor Dan. You helped me keep walking. You were like the Jesus you always preached about. Thank you.
But as sweet as this was, I need to say that I cannot in all good conscience recommend it as how to do true justice to the challenges of mental illness. I simply cannot.
I will always be grateful. But it’s not the way to go.
Because sustainable justice in a congregational setting can’t rest on any single person’s shoulders. For the pastor to do it all is overfunctioning. Sustainable justice in a congregational setting, which works to create sustainable justice in the larger world, is about all of us. Collective commitment. Communal engagement. The challenges are simply too big and multifaceted.
Says Dr. Thandeka, “… if someone tells you that she or he knows pain, loneliness, loss, fear, and dismay, but does not know the feeling of being sustained by a love that is wider, deeper and infinitely vaster than the sorrows, hear those words as a commission. Hear your commission to love, to create community, and to heal.”
Do you hear this?
If you come here to UUCA, you are not being ushered into some sit-and soak-it-all-up sort of passivity. You are not being invited into lethargy. You are not being invited to be a Wal Mart-Target-Amazon-like consumer. You are being charged to serve. You are being charged with the electrical charge of the Soul. You are being charged to get on up and not to sit down.
Be charged today! Find a purpose and a mission! Hear the commission!
Listen to this study from Baylor University. It indicates that while help from the church with depression and mental illness was the second priority of families with mental illness, it ranked 42nd on the list of requests from families that did not have a family member with mental illness. See this side-by-side with the statistical realities I mentioned earlier (that, for example, one out of every four adults is going to struggle with mental disability this year) and I hope you see that ranking the needs of people and families coping with mental illness 42nd is a recipe for congregational irrelevance. A recipe for doom. People are hungry for bread and we give them stones. Not going to cut it.
There are at least four things we can do.
One is education. So much to do around this. A recent survey found that 57% of adults WITHOUT mental illness symptoms believed that people are caring and sympathetic to persons with mental illness; but as for adults who DO have mental illness symptoms, only 25% of them agreed. The gap between the two is galling. Stigma, says the Surgeon General, is the “most formidable obstacle to future progress in the area of mental illness and health” because “stigma is an excuse for inaction and discrimination that is inexcusably outmoded” in our day and time. Nearly two-thirds of all people with mental disorders do not seek treatment or resist treatment—just like my mother. People aren’t afraid of putting a cast on a broken bone, but there’s something shameful about taking medication to stabilize a chemical imbalance in the brain. When the government at any level has to cut the budget, guess which programs get the axe first?
But education is the antidote. Hit the source of the prejudice hard. Call it what it is: “Sanism.” It’s a word I had never heard before, but I had asked Joetta Prost, past Board President who happens to be a psychologist, to send me some stuff to read, and you better believe she did. “Sanism,” says Michael L. Perlin, “is an irrational prejudice against people with mental illness [and] is of the same quality and character as other irrational prejudices such as racism, sexism, homophobia, and ethnic bigotry that cause (and are reflected in) prevailing social attitudes.” Attitudes such as: “people with mental illness are erratic, deviant, sexually uncontrollable, emotionally unstable, superstitious, lazy, and ignorant; that they demonstrate a primitive morality; they are invariably more dangerous than persons without mental illness.”
More dangerous? Compared to Dick Cheney? I don’t think so.
And then Michael Perlin makes a fascinating claim. That one explanation for the stubborn quality of the prejudice lies in history. He says, “Thousands of years ago, it was commonly believed that sickness was ‘a punishment sent by God.’ Historian Judith Neaman has concluded that ‘demonic possession remains the simplest, the most dramatic, and secretly, the most attractive of all explanations of insanity in the Middle Ages.’ Society saw madness as a condition ‘in which a person was possessed, controlled, or affected by some supernatural power or being, and this connection has remained extremely resilient in western culture.” So is that it? The stigma is ultimately rooted in an irrational feeling that people who are mentally ill echo all the creepiness of a movie like The Exorcist? With heads that rotate 360 degrees?
All I know is that my Mom died alone. At some level she probably thought she was a demon and unworthy of care. So she died alone.
We must hit “sanism” hard. Name it so we can claim it. Brain disorders have nothing to do with demons and devils. We are at a place where the vast majority of mental disorders can be managed, but stigma is the main obstacle to progress. So hit it hard.
That’s one thing to do, and here’s a second: Be more welcoming. An important way to do this is being more careful about language. Don’t say “the mentally ill.” Say, “people with mental illness.” Don’t say, “She’s a depressive.” Say, “She is a person with depression.” Can you see the difference? On the one hand, we have a form of speech that reduces a person with all their inherent worth and dignity to a narrow diagnosis; and then on the other hand, we have a form of expression that puts the person first—affirms that FIRST—and then acknowledges that one of their many characteristics has to do with mental illness.
Let’s cultivate a habit of using “people first” language. It reverses the tendency to stigmatize. It works to include people coping with mental illness in the larger circle of humanity, which is where we want them.
There’s this great story from the Talmud: A rabbi asks his students, “How do you know the first moment of dawn has arrived?” After a great silence, one pipes up, “When you can tell the difference between a sheep and a dog.” The rabbi shakes his head no. Another offers, “When you can tell the difference between a fig tree and an olive tree.” Again the rabbi shakes his head no. There are no other answers. The rabbi quietly walks in a circle around them, then says, ”You can know the first moment of dawn has arrived, when you look into the eyes of another human being and see yourself.”
Fight the stigma through education, be more welcoming through a more thoughtful use of language, and then, third of all, be supportive. Individually, for sure, but even more so as a congregation. Myles and Ortrude are a part of a covenant group here at UUCA called Journeying Friends, and that’s exactly what I’m talking about. Same goes for the Caregivers Support Group that meets later on today. On January 20th, your staff, at its January retreat, will have a two hour workshop that focuses on mental illness in the church and how to be more informed and more effective around this issue. Rev. Thickstun and I are planning on a similar training for our Lay Ministers, so that they can feel confident in being compassionate and helpful presences to people in need.
Let me add to all of this my excitement about the Lifelong Learning and Growth Minister we are currently is search of. As a congregation we cannot flourish unless the way we configure staff positions is in sync with the reality of our needs. Our reality is one in four adults coping with mental illness in any given year. Our reality is approximately 20 percent of youth ages 13 to 18 coping with mental illness in any given year, and of children ages 8 to 15: approximately 13 percent. To face this reality, and all the other realities of people in their journey from cradle to grave, we must have visionary leadership that makes a focus on this a priority and then knows how to implement. Unfortunately, in my experience, Unitarian Universalist congregations have historically fallen short in doing this—as opposed to conservative religionists whose theology may be painfully regressive (my opinion) but they do an absolutely outstanding job taking care of their people. We need to do that too.
We will do that here at UUCA.
Finally, there is the social justice dimension. As a congregation we come together to be Beloved Community, and then we work for the larger good. One aspect of this is brought up by the UUCA member we heard from earlier. She says, “For any patient in crisis who needs in-patient care, particularly a dual-diagnosis mental illness/addiction patient like our son, a minimum of 4 weeks in residential program is recommended. Just try to get a health insurer to say ‘yes’ to more than a couple of weeks of inpatient therapy.” Yeah. What she said. From health insurance, to job support, to ensuring that law enforcement can deal fairly and effectively with people who are mentally ill, and on and on—the justice issues are plentiful. Advocacy means improving the situation in the public sphere so that access to care is easier, there’s truly sufficient funding and support for mental health treatment, and mental health concerns are voiced loud and clear.
Four things we can do. At least four. Do them because you love these people in the pews that surround you. Do them because you love your family. Do them because you love yourself.
I do it because I love my mother, who, until recently, I had always thought I hated. But it’s not true. I love her. Pressure from above held her down on her knees. She could never stand up. But that doesn’t mean you can’t stand up, or someone you love.
We need to get up off of our knees. We need to make it possible.
We need to stand up.