Mom has been drinking and sobbing beside you for hours now. When Dad left for 9 months, he took you aside and gave you two chores: keep the lawn mowed and don’t let your mother kill herself. You are almost certain this is the night she is going to die. For fourteen years this woman has been a mystery to you, a fact which proved no obstacle to her cementing herself in your heart. You have known your whole life that she was unhappy. You have known for five years that she drank more than was a good idea. But the weeks since your father gave you your orders have proved an education in exactly how great the obstacles are that she has to try to surmount.
Your mother’s mind is different from yours. It functions, as far as you can tell, much like almost everyone else’s. Yours — the one that makes sense — is a model that is unique in your lived experience. You have been dragging Mary MacCracken, Eleanor Craig, and, by the time you were eleven, Bruno Bettelheim home from the library just to make reflections, to create a sense that you are not alone in the world. All but one of your friends are imaginary. You have fantasized about the potential for community in segregated special ed, but your parents are adamant: you should just buck up and be normal.
So far you haven’t pulled it off. You have long ago realised you never will.
You had not realised other people felt pain as deeply as you. They clearly do not feel the searing agony of light touch, the excruciating scrape of clothing, the burn of sunshine. And they seem incapable of understanding psychological pain. When you finally worked up the nerve to tell your mother of your own most recent suicide attempt, drunk on beer she had forced you to drink as a social lubricant, hoping against your knowledge that she would help, she said, “Ssshhhh, I’m watching M*A*S*H.” It was a commercial break halfway through a rerun. But here it is.
You have read in books about children who are loved and cherished. You have seen the way Mom is with your sister, the way Dad looks at your brother. You have fantasized about a life like that.
But you also know that people like you end up in institutions as adults. You cannot find a single representation of an adult who reminds you of yourself who lives free. And you have looked. There was one who got day passes…. You have been steeling yourself for the inevitable for half your life.
You think back to the first day at Red Hill Primary, your bladder straining, as you tried to determine what the other children were doing to attract Mrs. Sainsbury’s attention. She called on them and they asked to use the toilet. Why did she never call on you? What were they doing? As your socks became soggy, you had a sudden insight: this was it. This was why your parents looked at you like that. They wanted a child who just knew … the way everyone else’s child did.
Mom launches into another story. You concentrate, willing yourself to understand her, casting for details to help you help her.
You already knew your parents had met in the Dominican Republic, married in New York, conceived you on their wedding night and moved to Mexico City. You have already heard from Mom that she smoked and drank throughout the pregnancy to try to cope, that after your birth you were too demanding for her to get to the store for cigs, but that she had needed to drink more and more to cope with being the mother of a child who screamed when held, who refused to accept girlhood from the start, who was hospitalized until her milk dried up, who could not cope with a three-child playgroup, who broke bones and seemed not to be in pain but cried over nothing, who interpreted words oddly, who began running away as a pre-schooler, who seemed unafraid of abandonment at the library but refused to be left at the church creche.
Now you hear about the pregnancy. “There was another family with the name in the community,” Mom slurs. “They notified the wrong woman. I would have had an abortion … but everyone knew already.”
You pat her arm awkwardly, wondering whether this is true or just a backward projection of the intolerable pain of having a perfect blue-eyed, blonde-haired daughter, a handsome, charming brown-eyed, blond-haired son, and you. You do the inventory again: how young she was, how often she moved, losing her support system again and again, how early your father left for the office and how late he stayed, how you must be as alien to her as she is to you.
And yet you do not think that you are all that bad. You like the way you think, the way you solve problems, the way you carve up the world. At fourteen you have become involved in political organising, found a role you can play in a group. Unlike every other kid you know, you get no allowance; rather, you work for your pocket money — and at low wages, recognising that the families you work for are strapped. If you could grow up free, you think, you could be someone — even in this world of alien and hostile minds.
“It was the worst mistake of my life.”
You hold your body as tight as you can, trying not to let her see your reaction. You are not entirely sure she could, even if you began to scream, but you don’t want to take the chance.
The thing is, she’s right. Your relationship is not good, and even in 1981, in your parents’ community, you are tied to her like a weight.
You cannot be the kind of person she wants, and you know she cannot imagine a good life for herself if you are anyone else.
Can you fix it? If you tried again, and this time finished the job? You are not good at suicide. You first tried ten years earlier, after the second move, the second obliteration of your entire world. Your family is not a haven for you, and so every move — by now there have been nine — requires you to construct a universe from scratch. What if you ran again, and this time you never came back? Would that give her a good life?
But, no: it wouldn’t. She cares too much what the neighbors think. The people at her job, at her church, on her block, at the endless round of cocktail and dinner parties your father’s job require her to go to. For the rest of her life she would be That Woman Whose Kid Ran Away, even if no-one else so much as thought it, and it would be intolerable for her.
There is no way out for either of you. You cannot get away from your future; she cannot get away from your past.
She is still sobbing.
And in that moment, you see it: she should have killed her kid. At birth, in the first month, when you were still small enough for a pillow to do no bruising, and the neighbors would have thought it was a tragedy. You would have missed out — on so, so much — but it would have been the best thing for her. She should have killed her kid.
You are almost a decade from learning that, in her own inept way, she tried.
The next year, “St. Elsewhere” runs an episode that hits much too close to home. A family learns they are about to have a longed-for boy. He is going to have Down Syndrome. The doctor talks about the prenatal test as if it’s certain, which you know it isn’t, and then begins to make horrible predictions. The future of a child abandoned at birth and growing up in an institution like Willowbrook, Pennhurst or Beatrice is described as though it were the future of a child raised in a loving home, given a free and appropriate public education. The mother wants to raise the boy; the father suggests they get a pet instead. They choose abortion.
The show is defended on the grounds that, while it is inaccurate, it is at least compelling television. You know better. It’s pity porn playing to prejudice and contempt … which all those people with the wrong kind of brains spin as compassion.
Meanwhile, the self-advocacy movement, with its roots in Sweden in the sixties, is building. People once crowded in filth, decay, neglect, abuse and exploitation are planning conferences, talking to the media, and convincing elected officials to support smaller more integrated institutional settings like group homes.
Jason Kingsley and Mitchell Levitz are boys with Down Syndrome growing up in the free world. As young men, they will write “Count Us In,” a book that changes everything for so many. Their lives look nothing like the one described on “St. Elsewhere.”
By 2017, you will sit and watch Charlotte Fien, a poised young woman with Down Syndrome, address the United Nations. And yet the moment will be bittersweet: her topic will be the use of new technology to eradicate people with Down Syndrome through targeted abortion. “I have an extra chromosome,” she will say and so what?
People very similar to yourself are coming together, too, outside institutions, building community, seeing themselves reflected in one another, reveling in it. You begin to see children whose parents can name what is different about them, support and celebrate them. You begin to hear jokes you understand.
People are mastering communication systems, getting jobs, getting advanced degrees, raising families and documenting it all. If you were fourteen today it would be easy to imagine alternatives to the institutions you spent years in. The failure of imagination that led you to discount the value of your life is washed away.
But your Mom’s culture of devaluation and death continues.
Abortion isn’t an option for kids like you. People don’t know in advance. So they turn to murder.
For you the tipping point comes when six-year-old Charles-Antoine Blais is drowned in a bathtub and parents come together to support his murderer, his mother. She is offered a job at a charity supposedly supporting kids like him. When Michelle Dawson calls to ask what that is about, she is told children like Charles-Antoine ruin their parents’ lives.
A major disability charity releases a video normalizing disability filicide, and you are furious. Alex Spourdalakis is fourteen when his mother and grandmother murder him. Issy Stapleton is fourteen when her mother tries to murder her. It hits home.
In 2014, Julia Bascom, from the Autistic Self-Advocacy Network, reports that when reading a list of names of disabled people murdered by parents, she “could have sworn time stopped; we read down one poster, and then another, and every time I thought we were done, there were more names.” Many of the killers are praised to high heaven all over the place and given token punishments. After all, they have suffered so much already from their children’s existence.
Dahlia, the woman on the bed beside you has been restless and groaning in pain for hours now. She’s asleep or unconscious — you’re not sure which — but she is not at peace. She writhes slowly. Her breathing is uneven. Sometimes it stops for 45 seconds or more. Her catheter bag is empty: no urine has collected in about eight hours. You know this is the night Dahlia is going to die. The hospice nurse had snapped it at you when you called to ask if you could administer more morphine. “What did you expect?” she had asked. “Her kidneys are shutting down. It’s painful. This is how they die.”
You are the only one awake in the group home, where women with physical and intellectual disabilities live. Another staff person, this one making a little less than you, just under minimum wage, is sleeping in the back.
You are okay with Dahlia dying. She has been dying since you met her. You are not okay with it happening like this. Not suffering. But you don’t know what to do. You don’t want to touch her; you are afraid of inadvertently hurting her more. And your singing voice is no comfort to anyone. So you begin to speak. Whatever comes to mind, just so she knows she’s not alone.
You talk about how good it has been to get to know her. You talk about how glad you are that the staff at the home have come together to support her. Group homes are small institutions; they can be as soul-deadening as any other and because of small staffs and high turnover they can go from good to awful seemingly overnight. But you think this staff has done this one thing well.
You talk about what you know of Dahlia’s life, of her friends. As an overnight worker you never meet them but you see their names in the log. When was Dahlia placed in the state institution? You aren’t sure. Childhood, definitely: she has the taste for congregate living that comes from growing up in overcrowded cottages. She wouldn’t want to have her own apartment.
You tell Dahlia that it is okay to let go. A part of you hopes she does. All you can imagine in her future is pain. A part of you holds out for it not happening this way. But you cannot imagine a future for her other than suffering and death. Your mother’s voice scratches at your mind. Wouldn’t the kindest thing to do be to kill her?
Anne calls from down the hall. You tell Dahlia you will be back.
Generally you try to take your time with Anne. She is the sort of person you would enjoy being friends with, if you knew her on the outside. And she has been particularly badly served here: she grew up in a family and doesn’t have the automatic deference that even the good staff seem to expect — quite the opposite. When she got to her first, crisis placement group home, she could walk with a walker part-time, but the staff found her annoying and they took the walker as a surreptitious form of restraint. She atrophied. Now she can barely stand to transfer.
So usually the two of you go slowly and gently. But tonight you tell her Dahlia is having a hard time and together you hustle her into her wheelchair, onto the toilet and back to bed. Her eyes are teary. You know she is terrified of Dahlia’s coming death. You promise to do everything you can.
Back in Dahlia’s room, though, you don’t know what that might be. She seems worse, rolling back and forth on the bed, making sounds. And finally, in desperation, just to be doing something, you begin to take apart the catheter setup as if to empty the already-dry bag.
Then you see it.
Whoever did this chore last left a cap on a tube. That tube slides into the end of another one; the cap is invisible until the tubes are separated. But Dahlia has been making urine all evening and night, and has been unable to drain it from her bladder. That’s the pain.
You pull the cap and jam the tubes back together before too much liquid spills out, and you watch the collection bag begin to fill. You empty it; it fills again.
Slowly, as dawn comes, Dahlia drifts into peaceful sleep.
At a staff meeting, people question whether you should have left the cap on. It wouldn’t have taken much longer.
When the end comes, weeks afterward, it is on someone else’s shift, a few minutes after Dahlia is told she is being sent back to the hospital, a place she does not want to go. You understand that you made the right choice.
Years later, you read a column in the newspaper about a man who, faced with his beloved son’s short life, a life without the things the man seems to feel give his own life meaning, holds him while he dies, then struggles with the growing conviction that he should have killed his kid.
It does not persuade you.
There is more to life than breathing easily. There is also being held by a father who loves you enough to be there with you in your pain, even as his own is unbearable.
Too often, you have learned that your beliefs about what makes a life worth living are not trustworthy. Sometimes they are right, and you never get what you need. Sometimes they are wrong, and you learn new ways to live.
You realise for the first time that your Mom, all those years ago, was wrong. Even if you leave aside your own experience, your own hunger for a life, and even if you accept that you represent the greatest mistake of her life, you realise, you realise that her mistake consisted not in failing to embrace your death, but in failing to free you from her insistence that life has to follow a specific path to be worth living and set you free to explore the possibility of your life.
She couldn’t have given you everything you needed or much of what you wanted. She didn’t have it to give. But the insistence that if your life didn’t fit a certain pattern it was not worth enduring … she could have chosen not to give you that.
Just because you cannot imagine how a particular life can be good doesn’t mean there isn’t a way.
It might still have been bad. Life often is. And you would certainly have suffered from the strain of being isolated among people whose minds are alien to you. But it wouldn’t have been worse to have a parent who was open to possibility; and as you think back to the recent wedding photos of two people whom Mom would have equally hated being saddled with, the beaming guests, the wedding party at a ball pit, you think to yourself, it might have been amazing.