Who Knows Best14-Mar-2016
The state said a 19-year-old with an intellectual disability wasn’t equipped to look after her baby and whisked the newborn off to another family just after birth—a decision the mother was ready to fight. But how smart do you have to be to raise a child?
The young woman labored in the back seat of her parents’ car as it sped down the country highway toward the hospital. It was the Friday after Thanksgiving 2012, and already the tall trees pressing at the edges of the road were bare. Sara Gordon had felt the hard pangs before breakfast. Her baby, a girl, was born after lunch. The baby was perfect, as babies are, but Sara’s life to this point had been anything but. Poor, white, and single, Sara Gordon was 19 years old at the time of her daughter’s birth, living with her parents, and still in school. The baby’s father, whom Sara prefers to call “that low-life scumbag,” had denied paternity and was nowhere to be found. Not that she much cared. There was no affection between Sara and the scumbag, no relationship even — only sex and a pregnancy, which Sara failed to mention until her father discerned it at dinner one night when she was about eight weeks along. She pushed a plate of lasagna away and got up from the table. “She’s knocked up,” said Sam Gordon to his wife, Kim. “She better not be,” said Kim in response. But she knew he was right: Lasagna had always been Sara’s favorite dish.
Sara wanted to be a mother. She has a girlish attachment to Winnie-the-Pooh, and in the months leading up to her due date, she scoured Walmart looking for anything Pooh: socks, onesies, crib sheets. The family couldn’t afford much, but Sara splurged on a brand-new Pooh “snappy,” she says — a snuggly one-piece pajama suit with feet. And as her pregnancy progressed, a plan took shape. Kim would quit her job as a hospital aide to help tend to the child while Sara was in school. Sam, who worked in a junkyard, would provide what financial support he could.
Dana June Gordon weighed five pounds and 13 ounces at birth, her tiny pink head covered with white-blonde fuzz. She was named after her maternal great-grandmothers and is pseudonymous here, along with her mother and grandparents, to guard their privacy.
From the moment Sara entered the ward that day, the Gordons felt that the hospital staff disapproved of them. Sara Gordon is not like most of the young women who give birth at this small-town hospital. She takes little care of her appearance, preferring large, baggy T-shirts with wiseacre slogans (“I’ve stopped listening. Why haven’t you stopped talking?”) over clothing that might flatter her more. Her speech is flat, her enunciation imprecise, and she has a hard time paying attention in groups because too much chatter whizzes past her brain. Sara has an intellectual disability, a condition that until 2013 was listed in the DSM as “mental retardation.” Her IQ is around 70. She can read, but it’s a chore and something she frankly prefers not to do.
So when a nurse handed her a folder, which included a feeding chart, and asked her to read it, she was stymied. “I was like, What the heck?” She had already filled out the birth certificate and Social Security forms herself. According to the family’s version of things, Sara was awestruck and overwhelmed, as most new mothers are, and spent most of the first day in bed, holding her daughter and talking to her, counting her fingers and holding her little feet, at one point stripping her entirely bare so that she could better gaze on her daughter’s amazing, miniature self. “Oh my God, look at this belly!” she exclaimed. Sara couldn’t wait to dress her baby in the new outfits she’d bought and put Dana in the Pooh snappy straightaway — then fretted over how the baby seemed to swim in it. She also worried over the size of the nipple on the bottle she’d been given to feed her daughter. It was so big, and Dana’s mouth was so, so small. Sara asked one nurse for a different nipple and got the brush-off; but it turned out she was right, she says, and a second nurse found her a more comfortable fit.
Visiting hours ended at 8 p.m., and Sam and Kim went home so everybody could get some sleep. For the first time, Sara was left alone with her child, and she missed a feeding because she cannot tell time on a clock with hands. “Digital is so much better to read,” she explains to me during my second long visit with her and her family, nodding to the clock on their apartment wall. “That clock there? I would be off by, like, 45 minutes.”
The way the medical staff saw it, the birth of Dana Gordon was cause for concern. At some point, believing the baby’s life was at risk, someone alerted the Massachusetts Department of Children and Families. The hospital was worried that Sara “was not able to comprehend how to handle or care for the child due to the mother’s mental retardation,” according to a document published jointly by the U.S. Departments of Justice and Health and Human Services in connection with the case. In addition to having missed the feeding, Sara didn’t hold the baby safely. She seemed checked out, watching cartoons, according to a DCF account, while the baby cried.
On Sunday morning, two investigators from DCF appeared in Sara’s room. One of them, a man named Scott Henderson, asked Sara a bunch of questions. Who was the baby’s father? Who planned to care for the child? Kim explained that Sara would be the mother — but that, as the grandmother, she would help. Then Henderson asked Sara to show him that she could swaddle; she made an attempt, trying to wrap Dana snugly into a receiving blanket, but “it wasn’t good enough,” she remembers. “I didn’t do it right. He pushed me out of the way and said, ‘Let me see if I can do it,’ kind of joking about it. And they’re like, ‘Oh, you can’t do this.’ Like, very negative.” (DCF declined to comment on the details of the Sara Gordon case, citing continued work with the DOJ on issues related to the case.)
According to his report, Henderson believed that Sara could not keep her baby safe. In his presence, she forgot to burp the baby and to clean the spit out of her mouth; she held Dana clumsily and was uncomfortable changing her diaper. These complaints might apply to any first-time mother, but the state saw signs of deeper problems: “Dana needs to come into foster care at this time. There are concerns with Ms. Gordon’s ability to meet the basic needs of a newborn child.” On Commonwealth of Massachusetts letterhead, Henderson declared there was reason to believe that Dana Gordon had, already, suffered neglect at the hands of her biological mother. The baby would leave the hospital in the care of the state. And the Gordons would go home to their apartment full of baby supplies. “It was pretty bad when I had to pack it up and stick it in my closet so I wouldn’t see it again,” Sara says. “It was like, Wow, the baby stuff. Huh — no baby.”
How smart do you have to be to be a parent? Sara didn’t walk until she was 18 months old. She didn’t talk until she was 4. Potty-training was a years-long challenge: Kim can’t count the number of times she was called to Sara’s preschool classroom because Sara had had “an accident” — a mess no teacher wanted to touch. Now 22, she dresses herself and can keep herself clean; she can cook spaghetti and slice a cucumber and do her own laundry and scan a document, and though she does not drive, she can get herself, on foot or by bike, to meet her grandfather for a free church dinner on Mondays, Wednesdays, and Thursdays. She is learning to take the bus. According to an assessment done in the fall of 2014, Sara’s functioning is “borderline.” She has trouble keeping track of details — she may get “sidetracked,” as her father puts it, on the way to the store — and with processing and communicating complex ideas. She needs help interpreting the dosage instructions on the back of a medicine bottle, and she doesn’t know how big a teaspoon is. Her mother keeps track of her money.
The most concrete assessments of Sara’s abilities, of course, were made in school — an environment she loathed. It was an immersion experience in being judged and failing to live up to someone else’s standards. Sara always had an IEP (individualized education plan) that detailed the extent of her disability, assessed her learning style, and entitled her to special-education services. But under constant scrutiny, Sara developed a hypersensitivity to being underestimated — and an “irritation” (her word) toward anyone who presumed her incompetence. She told me — twice — about an English teacher who suggested she opt out of taking the Massachusetts state exam that high-school students have to pass to graduate. “I said to her, ‘You don’t think you have confidence in me, but I’m going to show you wrong.’ ” Sara did pass the English portion of the test, but not the science or the math, and received a “certificate” for having finished four years of high school, but no diploma.
But the frustrations had begun much earlier. In pre-K, she couldn’t sit still at circle time; in first grade, she was sent to a speech pathologist. She had few friends. Confronted with her own limitations and the impatience of her teachers, Sara would wind up affronted and angry. “Like, there would be a floor puzzle and I would do it the way I know how to do it and they would be like, ‘No, no, no, you’re doing it wrong. You have to do it this way.’ And I would be like, ‘I’m doing it. Why does it matter?’ ” Sara remembers. “And then they would show me and I would get irritated — I would get so mad at them. Eventually, I would end up in a corner — ”
“Which I thought was wrong,” adds her mother, in her wide New England accent. “Don’t put my daughter in the corner because you can’t — ”
“Because you don’t have the patience to sit down and try to …” Here Sara trails off.
However infuriating Sara and her mother found school, this educational setting represented an enormous leap forward for kids with intellectual disabilities. Until 1975, when Congress passed a law requiring all school districts to deliver “a free appropriate” public education to disabled kids, most children like Sara wouldn’t have gone to public school at all. They might have been kept at home and hidden away, or their parents might have been persuaded, for the sake of the other children, to send their disabled offspring to institutions where they were sometimes shackled, beaten, or starved — treated, in other words, as if they were not quite human. (In 1967, 200,000 Americans lived in these facilities against their will.)
That Sara was in school doing puzzles can be seen as a progressive victory. But while schools have (mostly) developed the capacity to teach and help the intellectually disabled within their four walls, the same supports are not there outside that environment. And there is still no consensus about what to do with an intellectually disabled adolescent who becomes sexually active. Some parents, like Kim, dream of married happiness for their disabled children, but others find peace of mind in surgeries or prescription drugs that render their kids infertile. Today’s schoolchildren may be instructed to have a respect for “difference,” but among their parents, there is still a deep ambivalence about the propriety of people with limited intelligence to procreate — an uncomfortable echo of Oliver Wendell Holmes, who, back in 1927, in the Supreme Court decision affirming the right of states to sterilize the “feeble minded” without their consent, declared that “three generations of imbeciles are enough.”
And when a woman with an intellectual disability does conceive, she often has no safety net — especially if, like Sara Gordon, she also has no means. Thirty-seven states still have laws on the books that make a disability reason enough to terminate a person’s parental rights, according to a groundbreaking investigation called “Rocking the Cradle” published by the National Council on Disability in September 2012, two months before Dana Gordon’s birth. People with all types of disabilities report losing custody of their children with “alarming frequency,” according to the report, and for those with intellectual disabilities, the rate can be as high as 80 percent. The cognition question thus has a civil-rights context. It’s not just “Can Sara Gordon do it?” It’s also “Should she?”
The social-science research in this area is sparse and was, for most of the 20th century, far from elucidating. In 1978, a paper showed that “retarded young mothers” were more controlling and punitive with their kids than a control group; in 1984, researchers working with a very small sample of “mothers with mental retardation” found that these women were significantly less sensitive to their children than mothers in any other group except for those already determined to have abused or neglected their kids. They were often interfering and intrusive while their babies played and generally nonresponsive to their children’s cues.
But in the 1980s, a psychologist in Toronto named Maurice Feldman began to study the mothering capabilities of these women in earnest, trying both to locate and to remediate their gaps in functioning. And he found that while most of the intellectually disabled mothers he studied failed to meet a minimum standard of care when endeavoring to accomplish parenting’s most basic tasks—treating diaper rash, cleaning baby bottles, and providing regular, nutritious meals — with the right kind of intervention, they could also succeed. By breaking down ordinary chores into step-by-step lists and then walking parents through the steps, again and again, Feldman found that he could raise a parent’s competency to an adequate level. He was even able to teach more nuanced skills, like praising, hugging, and talking to their young kids, which were long believed to be more difficult for them, since one of the signs of intellectual disability is a limited capacity for empathy.
That all a child needs is love seems, at first, irrefutable. But parse the meaning and the substance looks less clear. There is feral parental love, the kind that propels parents to leap in front of runaway taxis to protect their kin — or imagine, frightfully, that they might be called upon to do so. There is pride and awe at having made something, someone, miraculously and out of your own body. And then the way that bond yields, in part and over time, to enchantment at the child’s irreducible otherness. There is perspective. There is counsel. There is empathy, and sympathy, and compassion. There is advice, doled out in ways that require mental acrobatics and endurance and emotional stamina. There is safeguarding. There is scheduling. There is the duty felt to provide, and then the provision itself — the execution over exhausting years of a million quotidian chores, many of which require cognition and some of which don’t. Which is why the example of Sara Gordon poses such an excruciating dilemma. Parenting demands so many different kinds of ability that most of us start, at least, with some kind of deficit. But how much deficit is too much? At what point do a mother’s limitations disqualify her from being a mother?
The job of children’s services is to answer these questions, and as any child-welfare worker will tell you, they’re damned if they do and damned if they don’t. The wrong decision can have disastrous effects. In 2012, a mother with “mild mental retardation” in Florida was convicted of murder after her baby died of starvation; she couldn’t follow the directions on the powdered-formula can, her lawyer said. That same year, a baby drowned in the bathtub while his babysitter, who had an IQ of 65, lost track of time checking Facebook. Even Feldman, who believes that most women with intellectual disabilities can become good-enough mothers, refuses to say for sure. When he makes a clinical assessment in a custody proceeding, he always says, “It depends.”
Two days after Dana was put into foster care, a judge agreed with DCF that the child was at risk, and the Gordon family was launched into the strange legal universe in which a single interventionist act becomes the basis for years of acrimonious litigation, in which an aggrieved mother becomes an unwilling defendant and the state’s social workers are recast as police. Dana and her mother were each given separate lawyers, paid for by the state. Sara’s attorney, a leftist named Mark Watkins with a habit of smoking hand-rolled cigarettes, was determined to help Sara regain custody. Dana’s lawyer, Jeannie Rhinehart, a young African-American woman raised in Boston, saw her responsibility differently: She had to decide where Dana, an infant, would want to live if she could express her preferences. As she put it to me, “If the child could make a reasonable judgment, what would it be?”
When Dana Gordon was 11 days old, DCF took her out of a temporary foster home and placed her in the care of Jenny and Daniel Fox, a middle-aged couple who live in a tidy one-story house about an hour from the Gordons’ apartment, also deep in the Massachusetts woods. They are Mennonites. They have a livestock shed and a seated mower in their driveway. On the day I met her, Jenny was wearing a blue cotton dress down to her ankles, a starched white cap on her blonde-gray hair, and a purple fleece buttoned up against the chill. Her husband works in a woodworking shop that also employs others in their small religious community. “I love children,” Jenny Fox told me, “and I haven’t been able to have biological children of my own.” When Dana entered their lives, the Foxes had already raised two boys they’d adopted, now nearly grown, and were fostering a 1-year-old who was a paternal half-brother to the newborn Dana. (The father had relinquished paternity in this case, as he did with Dana.) But the Foxes had always yearned for a girl. Dana was, quite literally, the answer to their prayers. “It was a dream,” Jenny Fox said.
Picture-book foster families do exist, but foster care is frequently calamitous. Kally Walsh, Kim Gordon’s attorney, believes the problems of children’s services are among the human-rights outrages of our time — “the new innocence project,” she says. Massive, longitudinal studies have recently shown that kids, especially older ones, do better over the long term (less likely to wind up pregnant as teenagers, to be addicted to drugs, to land in prison) living with their own kin, even if those families are broken, chaotic, or neglectful. In the best of all possible worlds, “substitute care,” as the state euphemistically calls it, functions as a time-out in a family’s life, a chance for parents to reorganize so their kids can safely come home. To that end, the state articulates a set of tasks and goals, called a “service plan,” that the parent must meet to ameliorate the agency’s concerns and achieve family “reunification.” A drug user might need to enter rehab; a batterer might have to go to anger-management sessions.
The state’s terms initially allowed Sara to see Dana for one hour, once a week, and she made a point of showing up on time, with her mother, bearing food, diapers, changes of clothes, and toys. Sara understood that to get Dana back, she had better do as she was told. “The social worker was like, ‘You have to do this and this and this and this,’ ” Sara remembers, “and I was like, ‘Yeah.’ ” So she checked DCF’s boxes: She attended individual therapy and parenting classes and practiced diapering on baby dolls. She stayed in school. On her own initiative, she took and passed a CPR course.
Sara’s visits with Dana usually took place at one of the offices of Valuing Our Children, a local nonprofit that provides services — playgroups, secondhand-clothing exchanges, fathers’ and grandparents’ groups — to help their clients be better parents. There are three playrooms there stocked with toys and dolls, a changing table, and a kitchenette. A DCF social worker was always present during the visits, and she continued to record the agency’s concerns about Sara’s competence. (At first, Kim was not allowed to help Sara at all; later, she was permitted to do so for ten minutes.)
In the first few months, Sara’s affect was “blank,” remembers Jenny Fox. Several times, her social workers reported, Sara walked away from the squirming infant on the changing table. Other times, as Dana was learning to roll over, Sara let her bump her head. During the baby’s first year, Sara “has not always handled Dana safely,” DCF wrote in a status report, nor did she seem cognizant of the baby’s schedule. She didn’t ask the foster parents about recent feedings. It frequently took Sara more than 15 minutes to change Dana’s diaper, and twice, when Dana was crying, Sara could not manage to console her. Both times, after the baby cried nonstop for about 20 minutes, DCF terminated the visit. And in June 2013, when Dana Gordon was just 7 months old, DCF staff held an internal meeting and moved to change their stated goal from reunification to the termination of parental rights, setting into motion the machinery that would sever any legal claim Sara Gordon had to her daughter. Dana would be better off, they thought, living permanently with the Foxes.
Children’s services can’t unilaterally decide who is and isn’t entitled to be a parent — a court has to affirm the decision, judging both the fitness of parents and weighing “the best interests of the child,” a murky legal standard. A secure bond with a caregiver, especially in infancy, is crucial to healthy development, and the disruption of a secure bond is almost always traumatic. In this way, the early intervention in the case of Sara Gordon came to seem doubly unfair: Children’s services took the baby without giving Sara a reasonable chance to prove herself as a mother, and in doing so it impeded the development of the mother-child bond.
Jenny Fox meets one definition of “mother” — a solo operator, a keeper of details, the family’s representative to the world, a resource for her children during squabbles with friends and struggles at school. Jenny cooks and cleans and shops and remembers scheduled doctor’s appointments, ferrying the kids back and forth to church and school. She knows shoe sizes and emergency phone numbers and the names of teachers and favorite foods, and when she disciplines her children, she speaks to them quietly, gently, almost in a whisper. Jenny dressed the baby girl in her care in the long dresses of her faith; she was delighted to sew them herself.
But Sara sees a mother as something else: a member of a clan, a blood tie. Sara loves to describe Dana as her “mini-me.” The child looks as she did at the same age. Dana is rambunctious and willful and playful like she is, so Sara and her mother fretted that she might have inherited her vulnerabilities, too: lactose intolerance, a short attention span, delayed speech and gross motor skills. The Gordons say they implored DCF to require Jenny to take Dana to pediatricians familiar with Sara’s medical history, but the agency refused, saying the Foxes lived too far away. And the Gordons had their own concerns about the Foxes’ care: Once — Kim showed me a photo — Dana showed up to a visit with a black eye. Twice, she had burns on her fingers and arms.
That Dana’s own grandparents wanted to care for her, and that they had made concrete arrangements do to so, has always been a contentious fact in the case. Was the family’s plan, laid back in the summer of 2012, an admission of Sara’s incapacity? Or was it a signal that the Gordon family understood, as so many families do, that parenting is a collective enterprise at heart?
Kim Gordon remembers asking Scott Henderson to leave the baby with her in the hospital that November day. In light of DCF’s reservations about Sara, weren’t the baby’s own grandparents the next best thing? Usually, yes, but in this case Henderson said no. And the agency had reason, other than Sara’s apparent incompetence, to be concerned about leaving Dana with Sam and Kim. In the late 1990s, Sam and Kim Gordon had had their own run-in with DCF. Their three children, including Sara, were removed from their home while Sam, an alcoholic prone to unpredictable disappearances and violent rages, entered rehab and sobered up. (He says he has been sober ever since, for 18 years.) DCF also believed that Sara had been sexually abused, although Mark Watkins (who was Sam’s lawyer at the time) says the state’s expert found the evidence “inconclusive,” and Sam and Kim say it never happened. Kim remembers that day as a traumatic invasion, being blocked into a corner by four cops while Sara, then 4, was taken from the apartment. And though everyone in the family carries a retrospective horror of that period, which lasted about nine months, they also agree that Sam’s sobriety has been an immeasurable improvement. DCF “made my dad a ten times better person,” Sara says. Still, a mutual, historic suspicion colored every interaction between the Gordons and the agency, a tension that on the Gordons’ part was amplified by paranoia, powerlessness, and recollections of fear.
Then DCF changed its goal for Dana to adoption. “That’s when I said, ‘I’ve had enough,’ ” Kim remembers. Over the family’s adamant objections, DCF had reduced Sara’s visits to twice a month and continued to catalogue her deficits: She let the baby choke on Goldfish crackers; she didn’t hold on to her as she went down the playground slide; she didn’t grab her as she ran toward the street — even though the toddler was less than an arm’s length away. The Gordons had been keeping their own list, and Kim, who is detail-oriented, began flagging every instance when a social worker failed to keep an appointment and notifying DCF, in writing, every time Dana showed up to a visit with a bump or a bruise. Jenny Fox told DCF that Dana was an active child, always climbing; the bumps and scrapes, she said, were the usual badges of toddlerhood. But the burns, she explained, were something else. The families in their community used woodstoves, and Dana had gotten too close.
Sara hated that her daughter was being taught to say ‘Mama’ by another woman, and she hated that she was being raised as a Mennonite. The family values she hoped to teach her child, she told me, were broader than that, more like, “Who cares, as long as we get along? You treat me with respect, and I’ll treat you with respect.’ ”
Dana’s clothing became a particular battleground — “a stuck issue,” as a DCF social worker put it in one assessment of the case. The child would show up to visits wearing her long dresses with tiny buttonholes, and Sara would immediately undress her, putting her in outfits that constrained her less — in the summer, little matching tops with shorts. And often Sara would return the girl to the foster home in the clothing she chose as a way of asserting her imprint on the girl. “The longer we got into it, the more we could feel that they wanted her as much as we wanted her,” Jenny Fox remembers.
The Gordons believed that DCF was handling Sara’s case as her teachers had — punting on their ostensible goal, reunification, because they didn’t want to deal with Sara’s problems. Sara speaks especially bitterly about her first social worker, who would stand aside and watch as she tried to feed, soothe, and diaper Dana during visits, timing her and taking notes on her phone but offering no encouragement. “I needed more time. I can’t learn in five minutes. It just doesn’t fit in my book,” she tells me.
“They judge even before they read the book,” she continues. “Instead of reading the beginning, they go straight to the end. And they always judge people by what they think they are instead of what they legit are. Like, they’re like, ‘Oh, she’s mental, she’s stupid, she’s this, she’s that.’ They always judge a book by its cover even if it’s not even the right book. It could be a fairy-tale book and they’d start at the end.”
In the spring of 2014, Sara Gordon filed a discrimination complaint against DCF with the U.S. Department of Justice. In filing her claim, Sara got advice and support from a lot of people, but the person who helped her the most was, probably, a 61-year-old wheelchair user named Kelly Buckland, whom she does not know and with whom she has little in common. In 1970, Buckland, an Idaho farm boy, dove off a boat dock into shallow water and broke his neck. At 16 years old, he became a quadriplegic. He didn’t like to think of himself as disabled — he wanted to live, as much as possible, as he had before his accident — and he was shocked when he entered Boise State University in 1974 and was told he would be residing among the elderly and the infirm in a nursing home. “How do you take someone back to your place if you’re in a nursing home?” he asked me. “It’s a little tough.”
Buckland had his accident just as a broad disability-rights movement was taking shape, a coalition of interest groups insisting that the duty of government and other public institutions was not to segregate them but to accommodate their particular needs. The Independent Living Movement started with things like wheelchair ramps and Braille elevator buttons and culminated, finally, with the passage of the Americans With Disabilities Act, a sweeping federal law signed by President George H.W. Bush in 1990 that granted to disabled people equality in employment and compensation, public housing and schooling, and access to public buildings and transportation. Though not a particularly vocal or organized coalition, the intellectually disabled were explicitly included among the beneficiaries of this law; there have been, historically, divisions and hierarchies among these groups, but as the framers of the ADA saw it, the intellectually disabled had more in common with other disabled people owing to their shared experience of discrimination than they had differences.
Parenting was the next frontier. As Buckland traveled Idaho during the 1990s, he heard the same complaint again and again: that children were being taken away from disabled people. Buckland was childless at the time, but he knew discrimination when he saw it, and when he looked at the family-court statutes, he saw that a “handicap” was sufficient cause to remove a child from his or her home or to favor an abled parent over a disabled one in a custody suit. Moreover, those laws contained “horrible language,” Buckland remembers, “like ‘cripples’ and ‘retarded’ and what would now be considered incredibly offensive language.” Buckland believed that these family-court laws violated the spirit of the ADA, and in 1996, he and a small team of colleagues set about rewriting them.
Today, Buckland is the executive director of the National Council on Independent Living in Washington, D.C. “I really wanted to do something nationally,” he told me. “This is the most fundamental of human rights: the ability to reproduce and raise your children.” It’s not that all disabled people make good parents, Buckland told me, it’s that their parenting should be assessed on the merits and not on the basis of their disability. The first thing he did upon arriving in Washington was to urge the National Council on Disability, which advises the government on policy, to produce the “Rocking the Cradle” report. An NCD lawyer named Robyn Powell, also a wheelchair user, embraced the job with an almost ecstatic enthusiasm. “You have no idea,” she told me, “how many doctors have offered me a hysterectomy without being asked. And when I tell them I plan to have children, their jaw drops to the floor.”
It was Powell, in fact, who alerted the Department of Justice to the Sara Gordon case. In June 2014, she was giving a talk in Northampton, Massachusetts, when Shirley Mitchell and Bette Jenks, social workers and advocates for Sara Gordon from Valuing Our Children, approached her and told her Sara’s story. They were desperate and asked for her help.
Powell picked up the phone. “I reached out to the people I was working with over at Justice. I said, ‘I know you’re looking for stories,’ and I told them about Sara. And they said, ‘Oh my goodness.’ ”
If social workers from children’s services entered your home to assess the adequacy of your parenting, what would they see? The parent face you post on Instagram? Or a person who’s maybe sometimes too impatient or absent-minded or preoccupied with work, who’s prone to sulking, nagging, yelling, or drinking a third glass of wine? They would look at your physical and mental health; your employment history; your relationships; the cleanliness of your home and the food in your fridge; the health of the other children in your care. They would also assess your financial resources, since chronic illness and addiction and domestic abuse can be exacerbated by poverty. They would make judgments about all these things, perhaps especially poverty (“If you’re filthy rich, they don’t take your kids,” is how Sara puts it). But if they were doing their job right, they would look also at your “adaptive” abilities. As a parent, how do you compensate for your weaknesses?
In this way, Sara Gordon is extraordinary. People with intellectual disabilities tend to suffer from an overwhelming isolation, which can impede their parenting more than the disability itself. They have no one to ask, or don’t want to ask, about teething and toilet training and the politics of birthday parties. Long years as the object of “retard” jokes make the admission of uncertainties feel threatening, unsafe. But Sara is different. She is able, far more than most intellectually disabled people — maybe more than most people — to admit what she doesn’t know and to enlist the right kind of help. As she told me during the first of two long visits I made to see her and her family, “I know I learn different. And that’s what makes me me. If I didn’t have a disability, I probably wouldn’t act the same way.”
When I initially met Sara, at her lawyer’s house, in the company of her parents, she seemed to me not so much disabled as young. At 22, she is charming, rebellious, tough, sarcastic, good-natured, dramatic, impatient, obsessed with fairness. In larger groups, she is shy. As she was battling for her child, she was able to surround herself with a small army of surrogates, advocates, and fans — lawyers, social workers, educators, state legislators, even certain employees of DCF — who found her compelling and who admired her persistence, what might once have been called Sara’s moxie.
In talking about her life, Sara often dwells on her unhappiness at school. She describes herself as a former drama queen, who once thrived on conflict as a way of deflecting notice from her deficiencies. Together, Sara and her mother provided me with a litany of Sara’s trespasses: She hit a kid who called her a “cunt,” she swore at a teacher, she crushed someone’s cell phone; she was sent to the corner or into the hall or Kim had to come get her from school. I used the word defiant, and Sara corrected me. “I wouldn’t say defiant. I just didn’t like a lot of people,” she said decisively. “I’m still the same way. If I got to know you a little bit, that would be a different story because it would be, like, ‘Oh, it’s just you.’ I’d joke around with you. But there were certain people who were like, ‘Oh, I’m better than you.’ I didn’t like their attitude, looking down on you. ‘I have more money than you.’ ‘Oh, look, you’re wearing Walmart shoes. I have Bob’s.’ It’s like, who cares? They’re shoes.” Sara used to get her back up a lot, but the birth of her daughter was reorienting, she told me. She learned to channel her anger in a productive way.
One day in the spring of 2014, a contact at DCF suggested to Shirley Mitchell that Sara might want to make some noise, to try to draw the attention of prominent lawmakers or prosecutors to her case, and on May 20, Sara Gordon sent the first of 13 emails into the ether. The subject line: “Please Help Me Get My Daughter Back.” Sara did have some help from Shirley Mitchell typing these notes, but they are personal, they sound like her, and they are powerful. “Dana was stolen from me,” Sara wrote. “I want my daughter Dana to live with my parents and me. I have a right to raise my daughter … I have done nothing wrong. I have never hurt her. I want her safe.”
These emails continued through the winter, the list of recipients ballooning from 16 to 45 to 52. They came to include the Massachusetts child advocate; the governor; Robyn Powell; and, eventually, staffers at the DOJ and HHS. In August, lawyers from the DOJ and HHS arrived in rural Massachusetts and began driving around and asking a lot of questions. Through email, Sara kept the heat on. “I need to remind you that my daughter Dana June Gordon was STOLEN from me,” Sara wrote in September. “Every person has a right to parent. It doesn’t matter about their learning disability. Even if they have two broken arms you should be able to parent.”
The “foster care review” meeting that November was a turning point. All the parties in the case, about a dozen people, were assembled around a conference table in a dim room in a municipal building for a regular status update. The mood was tense, and Sara and Kim were feeling ignored and disrespected. “I got so fed up toward the end,” Sara told me. “That’s when I started speaking. I got tired of hearing: ‘She’s a bad mother.’ ‘She can’t take care of her child.’ ‘She shouldn’t have any more children.’ ”
“How would you feel?” she began. She talked about how it felt to see her own child, to whom she’d given birth, just twice a month for an hour, to have no say over her life or her future, and to be on the brink of losing her for good. “I forget how I worded it, but I was like, ‘What did I do to deserve my kid being taken away? I did nothing wrong.’ ” Sara remembers. “And they all just paused for I’d say probably like five minutes. It was quiet in that room. Quiet.”
The presiding reviewer recommended that DCF reverse its course. “Adoption is no longer the most appropriate permanency plan,” she wrote. It was obvious: Sara wanted the child. She lived with her parents, who were willing, and able, to help. In light of these facts, the reviewer suggested that Sam and Kim become Dana’s legal guardians, allowing “their disabled daughter to play a role.” One observer dissented, noting how bonded Dana seemed to be, at nearly 2, with the Foxes.
And in January 2015, DOJ and HHS issued a letter finding the Massachusetts Department of Children and Families had committed “extensive, ongoing violations” of the Americans With Disabilities Act in the case of Sara Gordon. “DCF acted based on Ms. Gordon’s disability as well as on DCF’s discriminatory assumptions and stereotypes about her disability,” it said. The letter said nothing about adequate parents or optimal outcomes or a 2-year-old’s best interests. It merely said that in its dealings with Sara Gordon, DCF made assumptions about Sara’s ability, that it did not take into account her strong support network, and that it consistently failed to accommodate her disability to help her live as much as possible like everyone else.
Dana Gordon was reunited with her biological mother in a courthouse in Greenfield, Massachusetts, on Monday, March 9, 2015. Judge Judith Phillips had granted guardianship of the child to Kim Gordon, the child’s grandmother, the previous Friday, and the Foxes had been given the weekend to say good-bye. Jenny Fox’s eyes well up when she recalls that moment — the suddenness of the reversal after being mother to the child for two full years. “As you can see, I’m a believer in God, and sometimes the only answer is that God knows the bigger picture and he knows what’s best for her and us in ways we cannot understand.” But when she comes across one of Dana’s tiny dresses, which she didn’t include among Dana’s other things when she packed her up to leave, she still breaks down.
The Gordons describe the 20 minutes they waited in the courthouse for Dana as the most agonizing of their lives. Kim screamed when she heard about the DOJ letter and started jumping around the apartment and crying like a child. “We won! Oh my God!” she remembers. “We won!” But for Sara, the reality took longer to sink in, and it wasn’t until she was in the courthouse waiting room, with her mother and her father and an empty car seat, that she began to feel like it was happening. “I was like, ‘Oh my God, she’s actually coming home.’ They’re not going to come and get her,” she says. “And then it hit.” The Gordons could hear Dana crying behind a door.
Finally, someone walked into the room holding her daughter, Sara remembers. “And the minute she saw me, she was like, ‘Oh my God, I get to go home.’ ”
“And out come the arms,” adds Kim.
And then Dana said “Mama.” The Gordon family grabbed their stuff, including a few sacks of Dana’s belongings. And then all four of them booked out of the courthouse as fast as they could, before anyone with any power had a chance to change their mind.
Chinese-takeout containers are spread all over the living-room floor in the Gordon-family apartment: beef with snow peas, egg rolls, a chicken dish. The apartment itself is tidy and small, but the furniture is grimy and ancient. There’s a dining table, but no one ever seems to want to eat there, Kim tells me with a little laugh. It’s plates and laps and sitting on the grubby rug in front of a TV set, which is off.
Sara brings silverware and cups for soda, while Dana whizzes around like a dervish. She, the child, is the center of everything. “More rice!” she says. Sam frets about spills and Kim tries to moves containers out of Dana’s path, while Dana tries to help herself to beef.
“Mom,” says Sara, “she likes anything that has to do with peas!” Sara herself is a pea lover.
“More!” says Dana, reaching for the spoon, but Sara cuts her off.
“Dana, you don’t eat that much.” What Dana wants — it’s Sam who perceives this — is not the food but the serving spoon. Also, she wants the plastic bag the food arrived in, so she can toss it in the air and watch it float back down. Her grandmother, looking up from her plate, sees the game and begins to bat the bag up so that Dana can catch it. But Sara disapproves. “Stop encouraging it,” she says, grumpily. Kim looks at me as if she’s been busted.
Eventually, inevitably, there’s a pile of beef and peas on the living-room rug. No one jumps up and scurries off for cleaning supplies, and no one scolds or raises a voice. “We have a dustpan,” Sara says, without moving. “Makes it easier.”
“Accidents happen,” Kim joins in.
“She’s just a baby,” I observe.
“She’s not a baby,” Sara points out accurately.
“She’s still a baby,” Kim responds, correcting her. “You’re still my baby.”
In fact, it’s late fall, and Dana’s 3rd birthday is a few weeks away, the first one they will celebrate together. Sara has a fantasy party in her head, a Pooh-Bear extravaganza with a Winnie-the-Pooh cake, and wrapping paper, and a bouncy house. They can’t afford a huge thing, but in Sara’s imagination, it’s a blowout. And just as Sara begins to describe the birthday party of her dreams, Dana comes hurtling across the living-room rug and throws herself at her mother’s body, flinging her arms around her neck. “Ow!” says Sara, in surprise, as if she doesn’t quite know what to do or say.
“What makes a good mother?” I ask later, while Sara’s own mother busies herself in the kitchen, putting the dishes away. Sara pauses for a minute to think. “Courage,” she answers. “Patience. Not killing your child. Nah — I’m just kidding on that one.”