I remember walking up the stairs to Robert’s apartment, determined to end the hateful stalemate that was immoveable, static, a mountain or a moon, and I walked up the stairs trembling and I would end it. I would end it if I died.
I remember most of it like snapshots, the way you remember things that happened when you were a very small child.
I remember the police walking up to our door, and why? Could it have been just because my daughter Abbie was at my house and her dad, Robert, was angry about that? It seems unreasonable, but then everything was unreasonable.
I remember opening the door to them, the way they stood back, one on each side of the door, hands hovering over their holstered guns. One officer asked, “Do you have any weapons?” and I answered, “We’re Mennonite,” a ridiculous answer for what felt like a ridiculous question.
I remember my stepson taking his little brother into his room, trying to protect him from seeing police in the house, and is that a memory, or is it a hope? The police said we may not close any doors, and that may be invention, too. I was underwater, breath held, heart paused, and one officer asked Abbie, “Are you OK to be here? Are you safe here?” and she glared (did she?) over his shoulder and said yes, yes, she was safe, she was fine, and they asked to see papers. They wanted to look at papers with signatures and official seals: is she mine? Is this girl flesh of my flesh? Is she my heart, my soul, my waking and dreaming life and all the hopes and heartaches I have lived? Did a judge, a lawyer, some official person declare her to be so?
Many days or weeks before, but maybe after, I called my son Jacob. It was December, his 18th birthday. “I never have to see you again, Mom. I’m never going to talk to you again. I don’t have to anymore and you can’t make me,” and the world was flat and I was flat and you were flat, too, and the phone burned to dust and someone was there, but who? Who was there? Someone held the parts together because the parts stay together and life goes and we are not flat, except we are. We are flat and so very, very sad.
Later, but not much later because I was leaning against the window in my bedroom and the window was very cold, and I rested my forehead against it and felt the coldness and the coldness kept me tethered to the flat, flat world, and Jacob was on the phone, in my ear, and his voice came out to me but it was carrying his father’s words. I don’t know most of the words anymore. I heard them 1,000, or 10,000, or maybe 1,000,000 times, if you count how often I heard them while I slept and when I made dinner and while I drove, but I don’t remember all of them. I heard them on a little silver flip-phone, and over a Palm Centro, and on a Droid X, and on a Samsung Note and occasionally even face to face. I heard them and they stabbed me all over, each one a tiny piercing needle and I cried until I was a husk of corn, stripped, withered, ugly. Wasted. Useless.
I remember walking up the stairs to Robert’s apartment, determined to end the hateful stalemate that was immoveable, static, a mountain or a moon, and I walked up the stairs trembling and I would end it. I would end it if I died. I would end it if he killed me. I hoped he would kill me. I hoped he would kill me 9 times and burn me down, flat me on the flat earth in the emptiness of life without them. I would die, I would hurt and I would die and it would be so right, so holy, a most perfect thing. I would not live without them anymore. I would not look outside to see some official person with a weapon or a clipboard come to decide about me. I would not watch for the cars with the official seals on them because he hoped I would lose not just the two children we shared, but my other children as well. I would not cry myself to sleep Jacob Abbie I want you I miss you life is empty everything hurts come home come home come home to me I love you so much and I’m flat and everything is burning and still I go to the grocery and pay the gas bill and watch cartoons with your brothers and where is the ground? Why does it buck and curl under my feet this way? I can’t love you this way. I can’t. I can’t. I’m flat. We’re all so flat; there’s nothing but the hate he cultivated and the hate has made us all flat.
I remember hearing my husband murmur to our youngest son, “Stay here with me. Mommy has to cry for awhile, but she’ll be OK,” and our little boy’s voice, angry, asking, “Why are they so mean? Why don’t they come back? Don’t they love us?” and I covered my head with pillows.
I remember walking up those apartment stairs the most. Crumbling concrete stairs, itchy gray wool socks on my feet, and a mild Albuquerque winter day, and I knocked on the door. Robert came to the door and I was ready. I would push my way in, force an end, stop the stalemate and surely one of us would die or sleep that night in a jail cell, but I would end it. I would breech this unbreechable thing with a broken jaw or a pair of handcuffs. Finally, I would see it through to the end.
All those times when he sent official people to my door: nod, nod, no sir, no weapons, yes ma’am, we have food in the kitchen, see? No sir, we don’t spank, yes ma’am we have a pediatrician. We are good, do you have that in your official papers? I am their mother, do you see here where the judge signed? Do you see where some official person with an important title said that these are people I have permission to love? Do you see this seal? This date stamp? This envelope, this name, this signature? I have no weapons, nothing useful except this phone, this hateful phone and these ears to hear and these eyes to see and my regret to keep me awake at night.
But the memories. I remember opening the door, so many times. I remember answering the phone. I remember mistakes, recriminations, allegations, and the cold, cold window against my forehead, and the world dark on the other side, and darkness is a cannibal and hate is a ravenous monster and they ate connection, cohesion, coherence, and left me with these snapshots. I moved the mountain. I breeched the unbreechable, and when I celebrate, I also cry, and I am more whole and more broken, both. I read and sleep and walk and wish that Robert could hurt, and pray to forgive. Forgive him, forgive them, forgive the nameless others, forgive me.
Carter’s favorite thing to do is something he calls “swinging stuff” and that my husband and I refer to as “ninja ballet.”
Carter’s favorite thing to do is something he calls “swinging stuff” and that my husband and I refer to as “ninja ballet.” It involves a plastic sword, light saber, or stick, and lots of jumping, spinning, and twirling (of both the stick and the boy himself).
Carter is devout in his practice of this art. For at least four years, he’s spent many hours every week, sometimes several hours in a single day, working with his stick in the yard. He spins. He whirls. He shouts.
The whole thing is surprisingly graceful and fun to watch. In his imagination, he’s fighting battles like the ones in the movies and TV shows he likes (Star Wars, Lord of the Rings, Ninjago), but from my place in the dining room where I watch him through the sliders, it looks more like dancing than dueling.
I see him out there, toiling happily, working and puffing and struggling to master a new move he’s invented and he is an artist of his own training and invention. “I can’t wait to go home and swing my stick,” he says sometimes after a day at school, and I imagine young Mozart saying after a day with math and history, “I can’t wait to go home and get to my piano.” He’s like Emily Dickinson, devoted to his art not for fame or admiration but because the art is its own reward.
Does that seem like too much? Maybe. Comparing an eleven-year-old boy playing in the yard with a broomstick to some of the greatest artists in history is a stretch, but Carter’s devotion is unassailable. Unless something changes in our culture, there aren’t going to be any TV shows that showcase his skills. He’s not going to get rich or famous because of it.
But…is his life not immeasurably better because he has art? Because he seeks to meet a challenge he has created for himself, and is diligent in improving his form? Because he loses himself in something he loves without concern that the thing he loves is nothing most people would recognize?
He does this with almost no audience. Sometimes, he shows Brian or me or one of his grandparents what he can do. He took his stick to our church retreat and enjoyed showing a few people his moves. He doesn’t mind being watched, but he doesn’t do it for the purpose of performance, or for any other purpose beyond the joy of the thing itself.
Whether we are stick swingers, word slingers, food composers, paint smearers, garden tenders, quilt builders, or music makers, may we all find some of Carter’s perseverance and dedication in ourselves. Our lives, too, will be immeasurably better.
Kelly Thomas was beat and beat and beat by Fullerton police officers on July 5, 2011 and while the cops beat him he cried for his dad and God and his mom and they beat him some more until he stopped moving.
I’m compelled to put some words here in honor of Kelly Thomas, some kind of expression of solidarity with his family. I want to express my outrage at yesterday’s acquittal of the men who murdered him, but my feelings are big and language seems too small. I went to sleep last night thinking of the Thomas family, woke up this morning thinking of him and praying a prayer about the men who killed Kelly that I’m pretty sure God doesn’t honor.
So I will tell you this small sliver, this little piece, and it is this: Kelly Thomas is Kelly Thomas. He is described in the news as a homeless man or a mentally ill man or a man with schizophrenia. Those things, those descriptors, are all true, but Kelly Thomas was Kelly Thomas and he was a person and he was beloved of his family and those things are also true.
The surveillance video shows that Kelly Thomas was beat and beat and beat by Fullerton police officers on July 5, 2011 and while the cops beat him he cried for his dad and God and his mom and they beat him some more until he stopped moving. When Kelly was finally unconscious, lying on the hot pavement, handcuffed, his blood pooling around him, the police officers began the anxious process of creating a suitable narrative. “He was really fighting,” one says. “He was definitely on something,” says another. Yes, yes, true. A person in the process of being beaten to death will fight. Terror is a powerful drug.
And they—those police officers, all six of them who got on top of, beat, pistol whipped, tased, and ultimately murdered a terrified, unarmed man—slept in their beds last night. They kissed their children goodnight.
The last time Ron and Cathy Thomas kissed their son goodnight was July 10, 2011, when they removed him from life support.
Think about that, because I can’t stop thinking about it: their babylove, the child for whom Cathy and Ron Thomas stayed up too late on Christmas Eve wrapping presents, and who they taught to ride a bike, who they took to the doctor when he had an earache and later, when he had other, more mysterious symptoms, and they fought and struggled and loved and tried to rescue him when schizophrenia grabbed him and wrestled him away from them and it was they who had to make the choice. It was they who signed the papers that authorized the hospital to turn off the machines. Mom and Dad, who couldn’t protect their son, who will live with the image of his devastated and dying body forever. They, who sat in the courtroom every day, listened to the audio of their son crying out for them, and finally listened to the acquittal of the men who hurt him unto death.
I kissed my own son goodnight, too. My little boy, who is terrified of anyone he doesn’t know touching him, who sometimes acts in inexplicable and frightening ways, who often doesn’t understand what is happening around him. My boy, whose illness sometimes makes him seem weird and unlikeable…how, how, how to make the world understand that he is my beloved son? That we, the parents, siblings, spouses, children, and friends of people with mental illness know them to be people? They are not the monsters in the movies or the villains in TV shows or amusing pop-culture characters but people.
Kelly Thomas was not disposable. He deserved so much better. His family deserved better, and all of us who live with or love someone with severe mental illness deserve better.
There are no disposable people, but we sure as hell act as if there are.
For us, the believers, the Jesus-people, the bible is not a book of history and rules. Our God is not a God of hate.
I am a Christian.
It’s hard for me to say that in a public forum, just those four words. Usually, if it comes up in conversation, I push out a dozen or more words in a rush: I’m a Christian, but I’m a peace and justice Christian, a love everyone Christian, and if you want to know about my faith I’d love to tell you, but if you don’t want to to talk about it, that’s cool too.
Here is the one of the saddest things I have ever heard after I reveal that I follow Jesus: Wow, I never would have guessed you were a Christian. You seem so nice.
How’s that for a punch in the guts?
I’m not actually that nice. I have a terrible temper, a tendency toward resentment, and a penchant for blue language that’s well documented here on my blog. I’ve done drugs, drunk alcohol to excess, stolen, gossiped, hurt people, taken more than my share, cheated, lied, and been, in general, a deeply flawed human being.
Flawed like Paul, who wrote in Romans 7:15, “I do not understand my own actions. For I do not do what I want, but I do the very thing I hate.” Broken, screwed up, sinful. Human.
What’s “nice” about me is, I know I’m not better than anyone. (Actually, sometimes I think I’m better than someone, and sometimes I feel inferior. This humility thing is a challenge.) That’s what people experience as niceness from Christians: if we don’t start beating them over the head with our big, leather-bound, gold-embossed bibles and telling them how utterly screwed they are, how messed up, evil, and doomed, they experience us as nice.
Folks, something’s wrong when people hear the word Christian and their first instinct is to duck.
Some Christians are dominating the media with the message that our faith is all about following a moral script, and that most of the items on that script have to do with what we do with our genitals, and when, and with whom. How sad, to reduce our collective story to one of penises and pregnancies. Our story began when Abraham went on a journey and continues now, a story of extravagant love, the tale of a God who pursues us, in all our brokenness, throughout history. God is not waiting for us to get better, or to get perfect. God is not waiting for anything.
For us, the believers, the Jesus-people, the bible is not a book of history and rules. Our God is not a God of hate. We’re living in a story that began with the people in the bible and continues now. The bible is alive, our faith is alive, and we are privileged to participate, not as servants but as the sons and daughters of God. We are Deborah, David, Abraham, Mary, Paul, James, Rebekah, Abigail. Flawed, and beloved of the divine.
We don’t have all the answers. We don’t even know most of the questions. That’s OK, because Jesus never said, Go forth and be perfect in every way, and then force all the other people to be perfect in the ways that you deem right, making certain nobody ever does anything with their genitals that seems icky to you!
Not in my bible. Jesus said, First, love the Lord your God with all your heart, and with all your soul, and with all your mind, and next, love each other. (I paraphrased that from Matthew 22.)
Love. A big party, a festival of love, and everyone is invited. Everyone. Pull up a chair and sit down. This is the ultimate come-as-you-are.
You have a baby, and everybody tells you, “Enjoy it; it goes so fast!” and you’re enjoying it, but you’re also living the day-to-day blur of diapers, sippy cups, lullabies, preschool decisions, homework help, and curfew arguments, and then one day you realize that all those people were right. It goes so fast. Faster than you could have imagined.
But it’s not sad. Sure, it’s a little bittersweet, because once upon a time this girl, my Abbie, was milk-drunk and heavy in my arms. She was a flurry of opinions, a blizzard of words, a soft request for me to rock her, to read her a book while she went to sleep. She was a halo of ginger curls over wildly pumping legs when she ran to meet me at the end of her preschool day. But it’s not sad because Abbie is still Abbie.
She’s 18 today. 18! It’s been a long time since she asked me to rock her to sleep and those ginger curls submit to the application of chemicals and appliances, but she is herself. She could never be anyone but herself, and she is extraordinary.
I’m just…stuck. How did this happen, when I love my life? It’s a hard life sometimes, sure, but it’s good. It’s very, very good, so why am I not living, creating, and enjoying?
Sometimes, I get frozen.
Actually, scratch that. Often, I am frozen. I live long stretches of my life like a deer hypnotized by headlights and it’s infuriating and frustrating and as an excuse to hate myself, it’s powerful. As a good slippery place from which to descend into depression, it’s very effective, except neither self-hate nor depression is my goal.
Let’s say I just dropped Carter off at school or a play date. I come in from the garage, let the dogs out, and pour myself a cup of coffee. I’m good with all that but now it gets sticky because I need to make a decision: what should I do next? I haven’t posted to my blog in days or weeks and I want to write something, and I’m feeling some pressure because I hate that I don’t post more regularly. There’s a proposal for a column that I need to finish and I’m angry at myself because it’s an awesome idea, plus I need to make some money. There are submissions for my church’s literary magazine to be read. There’s a book for which I’ve promised a review and have only read half, a long list of emails to answer, and don’t forget my book, with its stacks of notes and half-finished chapters gathering virtual dust in their electronic folders! That’s maybe one-third of what beckons me from my office, but I assume you get the idea. It’s a mash of things, most of them fulfilling and interesting, but there is also some sense of…not exactly obligation, but my life is not as good when I don’t do these things. I am my best self in the office, when I am creating and exploring, but I also struggle in there.
I sit down at my desk and adjust my chair, put on some music, light a candle, open all the necessary tabs on my browser and…crap. The few words I’ve produced are awful. I’m feeling a little guilty because Carter wore dirty socks this morning, so maybe I should tackle the laundry. I get up and carry my coffee cup through the kitchen (need to clean! need to shop! try to ignore!) and down the hall. The green hamper outside the hall bathroom is so full, clothes and sheets and towels are poking through the little holes and things are spilling over the top. How this hamper is so full is mysterious since Carter’s room looks like a textile-factory explosion. I kick my way through the clothes so I can open the window because it doesn’t smell very nice in there.
To heck with this, I think. I’m not picking up Carter’s clothes. He can do that himself when he gets home from school. I’ll start with Brian’s and my laundry, and I head to my room.
Where I am hit over the head with the fact that my little red-headed apple didn’t fall far from this tree because every pair of socks I have worn in the past week is on the floor on my side of the bed. The bedroom hamper is no more than 5 feet from the foot of the bed (more like 4 feet, what with the over-spillage), yet I pull off my socks before I get in the bed every night and leave them on the floor. Here are more coffee cups (there are matching groups of cups on my desk and on the table next to my favorite chair in the living room), plus water glasses and a towering stack of books that belies the fact that I switched to e-readers years ago and much prefer them.
I sit down on the bed and clear a little spot on the nightstand for my coffee cup. I’ll just sort the laundry. I’ll start with that, and I’ll feel a little better. A little more in control. I get up to gather laundry baskets and discover that two of them are in my Abbie’s room, full of clean laundry she hasn’t put away yet. One is in the laundry room, full of soggy towels from Saturday when Brian gave the dogs their baths. Also, Spencer’s clothes are in the dryer and there is a load of sheets in the washer that smell musty because I ran them two days ago. I look around at the drifts of dog hair in the laundry room (which is also the dog’s “bedroom”) and decide I need to sit down and have another cup of coffee.
It all seems too much, too big, and the chatter in my head is unbearable. My folks, my sister, my ex-husband, my 10th grade English teacher, the psychiatrist I saw when I was 19, some therapists, a pastor from childhood, occasionally even my kids, all their voices bundled, amplified, and heavily distorted by my shame (except the voices of my sister and my ex-husband who would say my worst assessments of myself don’t go far enough). Except it’s all my voice. Sometimes I can drown them all out with an audiobook or loud music and actually get something done. Other times, I can’t get above the struggle. The voices are deafening and exhausting and I’m overwhelmed with guilt because I am wasting my day, my talent, or my life (Welcome to my ego; is it not an unlovely thing?).
I stir like this all day, almost every day. I feel like I’m witnessing a fight-to-the-death between my brain’s ability to focus, organize, and execute, and my life. I keep us functioning at an acceptable level: there is food in the refrigerator, clean clothes in the closets, bills paid on time(ish), and everyone gets to their appointments on time. I meet my obligations at church and in the other organizations I’m part of and I never miss a hard deadline (though the soft ones and the ones I set for myself are symbolic at best), but the rest of it is a relentless battle, and life is not what it could be. I don’t have energy for relationships, creativity, and fun because I’m exhausted from this internal fight.
But dammit, the noise! If I shut down and shut it all out (books, Netflix, web surfing), I can get a little peace but I don’t get anything done, don’t even really live my life. When I try to accomplish something, the nattering begins. I’m not good enough; why didn’t I do this sooner; who do I think I am. If I wash the window sill above the kitchen sink, I notice the horrifying state of the front yard, and if I dust the window sills in the living room, I notice the horrifying state of the backyard. Carter needs his fingernails trimmed, we’re out of milk, I told a friend I’d write a piece for her new website, on and on and on and I am tired. I’ve read the books, taken the medicine, talked to the therapists, done the programs and I’m just…stuck. How did this happen, when I love my life? It’s a hard life sometimes, sure, but it’s good. It’s very, very good, so why am I not living, creating, and enjoying?
I believe there’s a solution, but all I really know so far is this: being hard on myself is not that solution. I’ve done that and it does not work. What I haven’t done is share the struggle publicly so let’s see where that gets me. Maybe you’ve experienced the same thing and I’m not all alone in the world. Stranger things have happened.
I have been deeply disturbed for weeks. I keep trying to write this blog post and backing away from it, over and over. I have decided not to publish it, and alternately been compelled to publish it. Ultimately, this is my truth. This is what my family survived, and if it was the reality for my family, then it’s the reality for other families because we aren’t unique. But back up; this doesn’t begin with me, but with another family.
The facts of the story: On September 3, 2013, Kelli Stapleton published a blog post in which she described an IEP meeting that ended with the district school refusing to provide services for Issy, Kelli’s 14-year-old autistic daughter. Issy had just been discharged from an inpatient treatment program in Kalamazoo, MI (three hours from the Stapleton home) where she was being treated for, among other things, aggressive behavior related to her autism. While at her inpatient program, Issy had developed a good relationship with a teacher in the junior high she attended while she was in treatment. Kelli and her husband, Matt, decided that Kelli and Issy would move to Kalamazoo so Issy could attend school there and Matt and the couple’s other two children would remain at home.
Later that same day, police found Kelli and Issy in the family’s van in a rural area near their home, both unconscious, during an apparent attempt by Kelli to end both their lives. Issy spent about a week in the hospital and is now recovering at home. Kelli is being held without bond on a felony attempted murder charge.
Kelli’s act set off a virtual bomb in the special needs/disability blogosphere, and especially in the autism world. I will not guess at Kelli’s motives for trying to kill herself and her daughter (we will only know her motives if and when she tells us), but I do know how I got to the edge of the cliff that Kelli went over.
I have been consumed by what Kelli did since I heard the news. Part of that is because I know Kelli and part is because I have been close to doing what she did. Since the news broke, the cry that has gone up from autistics and people with other disabilities is, we have been dehumanized. We are not considered valuable or worthy of consideration, kindness, freedom, or even our very lives.
That is true. Our culture as a whole, and we as individuals, have not honored every person as we should. We have hurt, isolated, ostracized, assaulted, sterilized, tortured, and killed people we don’t understand. We have deemed those who seem different less worthy, and often we have done the hurting in the name of helping, calling it therapy, treatment, or religion. If you or someone you love have been on the whip-crack end of that terrible phenomenon, I am sorry. You deserve better. You deserve all good things, all the support and kindness and love that this world and the family of humanity has to offer. The people who hurt you were wrong. If they had good intentions but hurt you anyway, they were wrong. If they loved you but hurt you anyway, they were wrong.
Kelli and Issy were (and are) victims of the same system, and that system made them victims of each other. When we, the ground-level stakeholders (people with disabilities, caregivers, and people who would like the world to be more just), focus on the ways Kelli and Issy victimized each other, we let all the other people off the hook. When we vilify Kelli, or autism, or the various therapies (on which I am no expert, since my disabled child has serious mental illness, not autism), we don’t scrutinize all the people who hold the power and the pursestrings.
Think in terms of power and investment. Kelli and Issy and the rest of the family were relatively powerless. Therapies, education, and help for Issy would only come via the bureaucracies that hold the purse strings, as they do for most of us who don’t have a few million dollars at our disposal. So let’s say the Stapleton family needed a level of help we’ll call X. That X represents the amount of help that enables the family to have a life that is life. Issy goes to school all day and there is adequate care there for her to be safe, healthy, and to learn as much as she can. There is enough help in the evenings and on weekends so that the other Stapleton children can have the attention of their parents, help with homework, family meals together, and regular outings. The Stapleton parents have the space they need to nurture their relationship and their individual interests. Issy has all the appropriate therapies that her team parents, teachers, and other care providers agree she needs, and her parents and siblings have therapists, too. There is so much help that the parents are not overwhelmed and the children are not afraid.
The Stapleton parents are completely invested in the family getting help level X. Their desire is for a life that resembles normal family life as much as possible. I’m making that assumption, of course, but it’s based on what I want for my own family so it’s not a big stretch.
What are the chances that they will get help level X? In my experience, nearly zero. I know dozens of families in which there are children with extraordinary needs, and the amount of help they get is always X minus at least half.
In late 2009, I had begun to consider that suicide was reasonable, as was ending the life of my mentally ill son, Carter, then 7 years old. There was no hate in me for Carter; in fact, it seemed to me that ending our lives was the only loving thing I could do. When I read of people condemning Kelli’s actions, saying that autism or disability is no excuse for murder, I am perplexed because I wasn’t looking for an excuse to kill my son; I was looking for an excuse not to. I believed that ending our lives was the only loving response to my son’s illness and suffering that was available to me.
(Pause. Breathe. We are all well now, and very safe.)
I’m not a stupid person, nor am I in general delusional, but when I lived with unrelenting and profound stress, fear, grief, and anger, coupled with severe sleep deficit, I changed. I watched the light go out in my other children’s eyes, watched my husband descend into periodic despair, and that changed me. Some people told me I was overreacting and others told me I was a saint, an angel, and a hero, and that changed me too.
Everything about Brian’s and my lives was shredded in the early years of Carter’s life. All the things we did that gave our lives meaning and joy were gone: church, prayer, sex, family relationships, play, conversation, reading, walking, writing. All the things we did that made our lives work were destroyed, or minimized to the point of dysfunction: maintaining our home, maintaining our yard, keeping up with the laundry, preparing meals, shopping. Those things that kept us feeling good about ourselves disappeared: hobbies, friendships, art, routine medical and dental care, taking care of our personal appearance, even hygiene, and of course sleep. We slept so little for so long, I’m not sure how we functioned at all.
I’m not talking about things that we experienced occasionally, or sometimes, or during the day, or for a few weeks here and a few weeks there. I’m talking about every minute, day and night, for months and years. We know that war and poverty change the structure and function of the brain; it’s not a stretch to assume that living with unrelenting and profound stress at home can do the same. And just as some infants come out of their painful early years in Russian or Bosnian orphanages just fine, and some come out deeply damaged, parents come to special needs parenting with our own strengths and weaknesses. Some of us will bounce, and some of us will eventually shatter.
In the midst of the chaos of our home life, we were condemned and criticized everywhere. I was patted on the head (once literally) and called a worried mom (many times, in many ways) when I told doctor after doctor after doctor that my child did not sleep, could not laugh, smashed his own face into the floor, and was not happy. I spent hours on the phone with the insurance company and got very little in return for my efforts because we just don’t cover developmental delay. I heard the questions again and again, searching for how Carter’s problems were my fault: did you take medicine, what do you feed him, were your other kids this way? I saw the nasty looks and heard the foul words from people at the grocery, the post office, and restaurants. We called for help and were added to waiting lists for tests, waiting lists for appointments, waiting lists for services.
I begged for help and heard, in a million ways and on a thousand days, no, we can’t help you. There’s nothing to be done. Go home. Deal with it.
I never devalued my son’s life. Our culture, society, and systems did that. When I waited on the playground for the kindergarten bell to ring and none of the other parents would talk to me because my son was “that boy,” the one who attacked other kids, couldn’t sit still, and occupied all of the class aide’s time and attention, I felt that shame, but it wasn’t mine. That shame belonged elsewhere—with the principal, lawmakers, and supervisors who refused to provide appropriate placement. They devalued my son and my family. Doctors who saw me, frantic and pleading, for a standard 5-minute visit, and handed me a book about sleep instead of sitting and hearing me and working with me to find a solution—they devalued my son, my family, and me, but I felt the shame.
In the midst of all of that, with my life swirling in pieces around me, the dominant emotion was sorrow. My little boy was in agony. He was afraid, sick, psychotic, depressed, aggressive, suicidal, manic, and miserable. Even the most basic pleasures of life, a good night’s sleep or an easy poop, were denied him. I would have happily chewed off my arms if that would have eased any portion of his pain. I have held him through thousands of hours of sleepless anguish, pulled him back from the brink of his own attempts to hurt himself or end his own life, and watched a million hurts chip away at his heart. I would have done anything to fix it. I did everything I knew to do, and still, he suffered.
We lived like that for eight years. It changed me. It very nearly broke me. I didn’t get to the place where suicide and murder seemed like appropriate actions because I was selfish. I didn’t get there because of hate or even anger. The world was hopelessly dark, help far too scarce, and the shame too large. Most of all, the agony seemed endless, limitless. I have read over and over in the weeks since Kelli Stapleton tried to kill herself and her daughter, “A mother should protect her child!” Sometimes, I couldn’t see any way to protect Carter except to take him home to Jesus.
We have enough help now. Carter isn’t nearly as sick as he was, and my husband and I have more ability as caregivers than we used to. We survived long enough to get to the tops of some waiting lists, and we finally gained access to an excellent pediatric psychiatrist, a therapist, and a behavioral management specialist. We found a parent support group and a wonderful school that my parents have paid for. We began the process of turning our lives around, and while it hasn’t gotten easy, it has gotten manageable. There is joy again. My gratitude for Carter’s relative health and my family’s improvement runs deep like a river, but many families don’t get to experience the relief we have enjoyed in the past few years.
Violence perpetrated upon people with disabilities is a dark and ugly part of the human story, but I refuse to believe that we’re not capable of thinking around the corner and separating the cruel perpetrators from the desperate ones. Issy, Kelli, and the whole Stapleton family were left twisting in the wind. They had services, but they weren’t enough. When someone in a family is repeatedly aggressive, that means that family needs more help. When people in a family are repeatedly seen in the hospital for injuries sustained at the hands of a family member (Kelli sustained brain injuries when she was attacked by Issy), that family needs more help. When people are being bitten, scratched, and punched; when people are not able to stop biting, scratching and punching; when some children are hiding in closets dialing 911 (as one Stapleton child is said to have done); that family needs more help.
Silence and condemnation are not the solutions to those problems. The only solution to the problem of not enough help is more help.
We need a serious cultural shift in the way we think about family and caregiving in general, and caring for people with disabilities specifically. Even in the worst times, I was not a cruel or bad mom who hated my child; I was a desperate and isolated mom of a very sick child who I loved. We have to speak the truth, listen to each other, and insist that we all deserve better.
The state of NM has yanked Medicaid and Medicare funding from fifteen agencies that provide mental health care services all across New Mexico. This represents 30,000 patients, many of them children, some of them the very sickest of the population of people with psychiatric illness.
I don’t use the word “yanked” accidentally or lightly. There was no warning; not for patients, not for providers, and not even for the administration and management of these agencies. The NM state government announced in June that it would halt funding to the agencies and hand over their administration to five Arizona agencies.
We’re flying our flag upside down. We’re on our knees, begging someone in power to come and save us. Our newspapers and media outlets, from Albuquerque to Taos to tiny Quay, NM, are suing our government, trying to force them to offer some transparency, some little hint of what has happened and where we’re going, and they are silent. New Mexico, like every state in the US, has its own auditor, but NM contracted with a Boston company to conduct the audit at a cost of $3.2 million. Why? We’ve heard no reports of corruption in the auditor’s office, so why did they do that? Were we just in the mood to send a whole lot of our money to Boston and Arizona and we needed to find a way to do that? Because for all the information we’ve been given, that makes about as much sense as anything.
The line we have heard again and again from the NM Human Services Department (HSD) has been that there will be no disruption of services. Even as the stories have begun to circulate indicating that the transition of management has been anything but smooth (and in some communities and families it has been disastrous), HSD has continued to assure us that all is well. Everything is fine.
I was on a conference call last week that was advertised as a “listening call” so that HSD and representatives of the Arizona agencies could hear consumer concerns. My alarm bells sounded right away, because contrary to the commonly held conception of people with mental illness, many patients do have jobs, and the meeting was held from 1:30 pm to 3:00 pm on a weekday, so that cuts one significant population of consumers out immediately. Next, the call was conducted in English, with no plans to conduct another meeting in Spanish or Navajo or with translation services available for speakers of other languages, removing many more people from potential participation. The announcement about the meeting went out via email, cutting out the many people in our state who don’t have access to a computer, and the fact that a phone was required for participation again removed a large group of people. Finally, many people who are very seriously ill just can’t. To expect a person with severe thought or mood disorder that isn’t under control to participate in such a call is laughable.
But maybe that’s part of how such a terrible thing is happening: its victims are a population that is less able to advocate for itself than many others.
To be blunt: everything is not fine, and every word spoken on that “listening” conference call by anyone who isn’t paid by HSD made that clear. There are children who are not in school because agencies that provided behavioral management services to children so they could attend school (commonly known as 1:1 services, and provided via Medicaid instead of the public schools in NM) don’t have them. There are families whose children are in foster care who can’t do the items on their family action plans because there are no providers to oversee and provide for those plans. The overflow from the agencies that are part of the audit is creating profound pressure on other agencies that receive public funding, so that service is reduced for nearly everyone across the state.
For perspective: I wrote A Dislocation of Mind, about the many weeks it took to get my daughter some psychiatric care in this state, over three months before the audit started. It’s not like the situation in mental health care and addiction treatment was good before this started; we’ve gone from abysmal to catastrophic. What I have detailed here are just a few hints to the horror that the audit is for the people on the ground: the patients and providers who live with the reality of mental illness and addiction every day of the year.
And yet, with all this, we’re having a very hard time getting any attention to this crisis. My friends, I’m asking you, please, if you live in NM, write to the governor and all our legislators and to HSD and insist that they put patients first. If there is money missing, certainly we need to find out where it went and what happened, but not at the expense of people who are sick. (By the way, does it seem unlikely to you that there is vast wrongdoing in mental health care but all the agencies that deal with broken bones, skin cancer, and the flu are pure as the driven snow? Yeah, me too.) The NM congressional delegation has asked US HHS Secretary Kathleen Sebelius to set up a public forum, but no date for that has been announced.
If you’re not in NM, please send a note to anyone you know in national media. No one seems to be all that interested, and I am no cynic, but it’s hard not to think that few people care because people with mental illness are a little weird and scary and not always likable (Just like the rest of us, but don’t people with mental illness make the handiest scapegoats?). We need the federal government to pay some attention to us, and my fingers and those of my advocate friends are about raw with all the letter writing.
Watch this space for links to a radio series on the audit, which will include part of an interview I did with Tristan Ahtone, the public health reporter at Fronteras. If you’re in NM, you can listen to it on KUNM tomorrow during Morning Edition in the am and All Things Considered in the pm, or you can stream it if you’re not in NM.
Yesterday, New Mexico State District Judge Alan Malott issued the order: all clerks in Bernalillo and Santa Fe counties must begin issuing marriage licenses “without regard to the couples’ sexual orientation or gender” by today at 8 am, making them the second and third counties in which same-sex marriage is legal. As of this moment, 6 pm on Tuesday, August 27, 2013, same-sex marriage is legal in a total of 6 New Mexico counties: Bernalillo, Santa Fe, Doña Ana, Valencia, San Miguel and Taos.
I promised myself years ago that when marriage equality came to my city, I wouldn’t miss the party. Equality New Mexico and the Democratic Party of New Mexico hosted a mass wedding celebration at Albuquerque Civic Plaza at noon, so I went there. Early.
Very, very early.
But it could not have been a prettier day if we’d ordered it up special, so I found a shady spot where I could see happy couples emerging from the county clerk’s office and settled in with my Kindle.
Soon, people began to arrive and prepare: flowers, a sound system, and excitement.
And media. Lots of media. Since I was there so early I’d staked out my spot. I think it may have been physically painful for the media people to see me, with my little Canon PowerShot, in the prime photographing spot while they jockeyed for position with their giant cameras.
There were lots of people on hand to perform weddings. The man on the right is Rabbi Harry Rosenfeld of Congregation Albert.
It’s always good to see bored cops at events. The opposition (Which is a funny way to put it; what do they oppose? LOVE???) was one man with a sign. He had three friends with him. They gave up and went home not long after they arrived.
Showing off the piece of paper that represents all that has been denied them for so long. It looks just like mine! Hooray equality! Hooray love!
Judge Jason Greenlee begins reading the vows, using spouse throughout. He declared everyone married and the crowd erupted with joyful shouting and whistling. After the mass wedding, some of the couples peeled off to request vows with clergy of their own faith tradition.
There were a lot of people shooting out flames of happiness.
I’m so proud of my city, and so happy that we have taken this giant step in the direction of real equality for all our people!
I’ve been waiting years for my own marriage to stop being a privilege that is vaguely tainted by others’ lack of access to it. Today, here in my city, my marriage feels cleaner and lighter because any two adults who want a marriage can have one. That doesn’t weaken my marriage; that strengthens it.
It’s a good good good day. Congratulations to all the newlyweds (though of course some of you have been married in all ways except this one for much longer than I have). May your lives together be filled with love and laughter and all the recognition that many of us take for granted. Congratulations New Mexico!
We dare because it is always OK to ask for what we need. Always.
You probably saw the hateful pink letter this week, the one addressed and delivered to the family of Max Begley of Ontario (If you haven’t read it, please use this link to read it. I don’t care to repost it here.). The social media outcry has been huge because the letter represents the worst of the attitudes to which people with disabilities are subject. People read that letter and were shocked; how could anyone suggest to a mother that her child be euthanized? A mother herself, no less? Who says that about a child?
And yet, I remember the time I was at the grocery and there was a man there who had Tourette’s syndrome or a similar disorder. Every few seconds, he vocalized loudly, and I heard a woman say under her breath, “Freaky retards should stay home.” In the meantime, my own son, eight at the time, was at home with his dad, flapping and swinging his way through an elaborate stereotypy that dominated his body for months.
There was the time Carter and I were at the post office and a stranger, observing Carter’s behavior, called him a brain-damaged brat.
Thousands of times, I have turned on the TV after a mass shooting or a celebrity meltdown to hear talking heads discuss the mentally ill and have resolved, again, to protect Carter from knowing that the words mental illness apply to him as long as I possibly can.
To sum up: some people want to know, how dare you ask the world to speak to you in a new way? They mean well; this is just the way life is! How dare you?
To sum up the anonymous letter sent to Max Begley’s family: how dare you inflict your son on the world?
To sum up the comment from the woman in the grocery: how dare he be out here in the world where there are other people who might see and hear him?
How dare we?
Why are parents of disabled children so incredibly self centered and self focused? They want everyone to bend over backwards to accommodate them and their kid. Don’t you know that EVERYONE has their battles? It’s not all about you, all the time! How often do you reach out to your friends to find out how they are doing? How often do you even know what is going on in anyone elses’ [sic] life except your own?
Asking for what we need is not an indication of self-centeredness or selfishness. Asking for what we need is healthy.
Each of us, whether we have a child with a disability or a typical child, has our own set of issues to deal with on a daily basis. Some, admittedly, are more complex than others. But, again, I stress; you can either let all that is thrown at you drag you down and OWN YOU, or you can wrestle your life back and OWN IT. The choice remains yours.
Asking for what we need is not weakness. Asking for what we need is brave.
Complaining about it and attacking those in society that make attempts to understand my situation by asking questions, or comments like the “What You Say…” is counterproductive. It only serves to make the situation worse and as so many have pointed out on this blog, who among us needs more to fret over and get upset about, not me.
Asking for what we need is not attacking others. Asking for what we need builds relationships.
Just don’t assume that ALL parents of disabled children or people with disabilities are that angry and negative all the time. Most of us get over it and get on with our lives.
Asking for what we need is not a sign of anger or negativity. Asking for what we need is proactive.
I also feel that if you can identify that a person is well-meaning, there is no need to make other assumptions about they are saying. Trying to be understanding is a two way street.
Asking for what we need doesn’t mean we think that other people are bad or wrong. Sharing information is sometimes part of asking for what we need.
All I got from this is that it is better to ignore or show no support to you or any mom with a child that has disabilities so that I don’t offend you or them. Isn’t it worth looking past the words that were said and appreciate the effort of support and even care towards you and your family.
Asking for what we need is not criticism. Asking for what we need is an invitation to deeper relationship.
Sounds like you’d rather not talk to people who don’t have a child with disabilities. Shame on them for trying to be supportive or positive? Maybe they should just tell you, “Wow, it must suck to have a kid like that.” Maybe you could print out a list of things that are acceptable for them to say to you so you won’t be upset by them trying to say a nice thing and messing it up.
Asking for what we need is not shutting people out. Asking for what we need is a request for healthier community and an effort on our part to build that community.
So even if people are trying to be nice, it’s THEIR fault that YOU interpret their comments a different way than they were intended. So basically everyone should just shut up and not say anything because even the people who are being nice will still be villified [sic] in your mind.
Asking for what we need is neither hate nor vilification. Asking for what we need is an appeal to our common humanity.
It comes across a little bitter.
Asking for what we need is not bitter. Asking for what we need is hopeful
I think it’s important to remember, though, that in MOST cases, these people are trying to be helpful.
Asking for what we need is not ignorance. Asking for what we need is about believing the best of people.
We dare to ask for what we and our loved ones need because people with disabilities are, first, people. We are humans who have lives to live. We need to go places and do things, just like you. We need sensitivity and kindness, just like everyone else.
We dare because it is always OK to ask for what we need. Always. Some people don’t want to meet our needs, and it is still good and healthy for us to ask.