“Do you have Down syndrome, Mama?” Louisa asks me. “No, I don’t,” I say. “It’s something that makes you unique and special.” Andy and I have talked to Louisa about Down syndrome in all the ways that parents are supposed to. I have told her that it is something she was born with and she seems to understand that it is an important part of her. When she introduces herself to someone, sometimes she says, “I am Louisa and I have Down syndrome.” She is proud and confident, as Andy and I have taught her to be. But there are two ways I can think of to tell Louisa about Down syndrome. The first is to explain what a chromosome is and say that Down syndrome is one of the many traits that make up who she is. The second is to explain what our society perceives Down syndrome to be. The latter is the more complex narrative, riddled with the values of intelligence testing. It is this story that I find so necessary to tell to her, but also too unbearably devastating to do so. How, for example, will I ever explain to her that if she was born fifty years earlier, she might not have been able to go to a school with her friends? How will I explain to her that some laws that are unfair to people with Down syndrome are remnants of the ideas of eugenicists like Goddard? How will I manage to help her see that this is not her story, but that it nonetheless informs the way that people see her?

  For more than 100 years, IQ tests have shaped a particularly persuasive and entrenched narrative about human value and belonging. This narrative tells us that high test scores equal success, prosperity, and happiness, and that our ability to achieve that success is also a measure of our worth. It took Louisa to show me how this narrative benefits some and disadvantages others. But I have also learned that the narrative can change, that we can value different aspects of intelligence and education, which would lead to a more equitable world that affirms a diversity of ways of being in it.

  It is often assumed that IQ testing, if it is pernicious at all, only affects a small percentage of the population, the 2 percent or so with intellectual disabilities. But the logic of IQ tests has embedded itself in our culture in powerful ways that impact all of us. For a long time, psychologists were convinced that our IQ predetermined our narrative, our life path. This belief persists today and muddles each individual’s ability to define her own identity. If you constantly receive messages from parents, teachers, and culture more broadly that high test scores matter above all else, you will believe it. Whether your test scores are high or not, this is an artificial and exhausting narrative to follow. I grew more sensitive to this as a teacher when I became Louisa’s mother. I began to worry that I was part of a narrative that was harmful, not only to my daughter, but to my students as well.

  I witness my students searching for the fulfillment promised to them by our culture of testing and intelligence. They face deep, personal struggles when they cannot find it. But some of my students are starting to search for new narratives, alternative paths to the one they have been told they should follow. Once, after giving a final exam, I reminded one of my bleary-eyed students that she hadn’t turned in her writing assignment that was due a week before. Her final grade in the course was going to take a hit. “I know. I’m good,” she told me. She explained that she really loved the class but was struggling and choosing to prioritize her health over her grades. “Cool,” I said and wished her a restful break. I admit that there was a time when I might have seen this student as a failure. I might have even chided her for not completing her work. But now I think about how that student was taking control of her narrative and making a decision that was actually . . . smart.

  Narratives and history tell us who we are and what we believe. Tales from the medical community about intelligence often focus on genetically determined deficiency. Descriptions of Down syndrome, like one found in Siddhartha Mukherjee’s acclaimed book The Gene: An Intimate History, provide a long list of cognitive impairments people with Down syndrome may experience. Mukherjee writes, “Many children die in infancy or childhood and only a few survive to late adulthood.” Beyond this factual inaccuracy—the life expectancy of people with Down syndrome has actually increased dramatically in recent decades, from twenty-five in the 1980s to more than sixty today—the statement makes clear that Mukherjee and other medical professionals cast Down syndrome as a genetic defect, implying that it is an unfortunate aberration from health that needs to be pitied or cured. Mukherjee’s words reminded me of Bernard Bard and his son Philip. Bard trusted the narrative that doctors gave him, sealing the fate of his son before his story ever even had a chance to unfold.

  Such narratives are typical of what new parents still encounter the first time they do an internet search for Down syndrome. The website of the Centers for Disease Control classifies Down syndrome as a birth defect and emphasizes developmental delays and cognitive abnormalities. Given the narratives of Down syndrome provided by medical sources, there is still a need to write alternative stories that emphasize the things kids like Louisa can do, instead of assuming that there are many things they can’t.

  I searched for more complex narratives that respected Down syndrome and other intellectual disabilities as part of the human condition. They were hard to find. Stories I heard on the news about a young woman included on the high school cheerleading squad or the student awarded homecoming king by his peers only reminded me of how problematic it was that these stories were newsworthy in the first place and how hard they tried to make me feel good that people with Down syndrome were allowed these token moments of inclusion. These tales don’t change the narrative. They only provide fleeting opportunities for people with Down syndrome to be part of old stories. Other stories I read seemed deeply untrue—that Down syndrome ruins the lives of parents, causes financial ruin, and leads to social isolation. And there are only a few memoirs written by people with Down syndrome who share their own story.

  Given the deep bond between parent and child, I assumed that memoirs of parents might provide a fuller and more complex picture of humanity. But to counter narratives of medical deficiency, some parents have developed plots of spiritual awakening, in which they are taken from despair to enlightenment by the growth of their child. By following a plot trajectory that is defined by grief, memoirs often suggest that the child’s main function in the world is to provide a lesson to the parent. Such lessons extend into the religious realm; children with Down syndrome are described as special gifts from God. Some parents assert a kind of clairvoyancy for their children, compensating for the dehumanization of medical narratives with claims to superhuman powers. I can relate to one of the conclusions that parents make: what you see is not always what is happening. Yet this doesn’t mean that Louisa has supernatural powers. Such a claim would deny her humanity as much as the diagnostic narrative of Mukherjee. It also narrowly portrays a child through the single lens of the spiritual needs of the parent. I sought something more honest, not wrapped up in simplified messages of God’s plan.

  I came to realize that my experience of motherhood did not fit the plot of maternal awakening and certainly didn’t fit the plot of a tragedy. These stories would cast my daughter in the role of someone to be pitied or an angel from heaven. She is neither; both narratives deny her the dignity of human complexity. Eventually I tossed out the old narratives and realized that my daughter deserves a new one. The ultimate act of empathy would be to make a space for the voices of those with intellectual differences, providing ways for those like my daughter to tell her own story.

  And so there will be no moment of redemption, no moment in which Louisa will overcome what makes her unique and prove that she is just like everyone else. Such a moment would only affirm the barriers in place, that they don’t really need to change. Limitations can be overcome if we work hard enough to do so, many narratives of struggle tell us. We will continue to encourage Louisa to work hard and to do her best. But, in fact, Louisa is extraordinary just the way she is, and there is nothing she needs to be or overcome in order to prove that.

  Our understanding of intelligence, its values and purpose in our world, needs to change. Not Louisa. Until we reckon with the history of IQ tests and see their impact on our world, we should not feel too proud of fleeting moments of inclusion that ultimately reinforce the belief that our values of intelligence are just fine the way they are.

  But new narratives can’t escape the influence of old ones. Andy and I continue to allow psychologists and school administrators to give Louisa an IQ test every three years. For me, the uncertainties of living off the intelligence grid, so to speak, are too vast. A truth I discovered early on in this journey persists—not taking an IQ test would risk denying Louisa care and support that she might need. I still resent that Louisa has to endure more tests than most kids, who already take so many that the distinction between learning and testing seems to have all but disappeared. I still fear that someone will judge her unfairly. But that does not mean I can’t demand that the evaluation for care and support is better and more humane than it has historically been. New narratives have to reckon with history, and I can still demand that our world starts to see beyond the IQ score. And if Louisa wants to stop taking so many tests in the future, then we will support that decision.

  When Louisa started middle school, I figured that was as good a reason as any to address the boxes upon boxes of toys in our basement and decide what to do with them. But actually I knew what was to be done with them, as we can’t store them forever. The idea of still holding on to her baby toys as Louisa enters middle school seemed ridiculous and a great motivation to clean our basement. But it was equally difficult to imagine giving them away. There were sets of colorful wooden beads that Louisa manipulated with her chubby baby fingers to string them onto a shoelace. There were puzzles with simple geometric shapes that now looked to me like distant relatives of the form board test that Goddard relied on. I packed make-believe food into paper sacks—wooden shapes painted and velcroed together to look like cucumbers and hamburgers, plastic teapots, a pretend mixer. Going through these toys seemed like a cruel form of self-inflicted grief. I could linger in these memories of the early days of babyhood, but never return to them.

  I repeated to Andy over and over as we taped boxes, Keeping these toys won’t make time stop; keeping them won’t stop her from growing up. I needed to remind myself of this. There was an irrational part of me that thought that by giving all of these toys away, Louisa would lose what she had gained from having them. Would her fine motor skills suffer if I gave away the toy pig and its plastic coins that she grabbed and dropped into the slot on its back? Or, even worse, would she forget all the time we spent reading books and playing on the polka-dot rug in her bedroom if the books and toys were no longer in our house? I still can’t quantify how much all these things helped Louisa, but I know that it was the time we spent together playing, laughing, and learning that matters most.

  In a way, I am back at the beginning, uncertain what the precise purpose of all these toys and activities are, but also completely unable to give them up. I’ve realized that the resolution, the reckoning that needs to be done, is about learning to sit with the uncertainty and the lack of explanation for how I can help Louisa be her best self. Despite my efforts, I am not entirely responsible for who Louisa is, and that lack of control is one of the hardest things to reckon with.

  Sometimes I look at Louisa and I can’t believe that she is here and I am lucky enough to be her mother. I feel this as I watch her twirl around in our backyard from the deck at the back of our house, the same spot where Andy and I ate fish tacos the night before she was born. Her arms are stretched out to the sides and she is singing at the top of her lungs. She is lost in an imaginary world of play as the yellow and red leaves fall from towering trees and dance around her. I feel a deep gratitude when her small body curls into mine just before she falls asleep, her breath gradually falling into an even rhythm and her fingers becoming perfectly still.

  I wish I could offer the pat resolution that we cracked the code and Louisa is now sailing through school without frustration, lost assignments, and long hours of homework to keep her on track. But middle school brought new routines, higher expectations, and skills to be mastered. Louisa memorized her locker combination but can’t get the spinning and sequencing of numbers quite right. The locker jams and I worry that her teachers are getting tired of helping her. There is more work, and the faster pace is exhausting. There is so little time to slow down and rest. The routine is teaching me more about why my college students are so grade obsessed. It starts in middle school, with the online gradebooks and the relentless demands to learn, test, repeat.

  But there have been some bright spots too. A few weeks after Louisa started sixth grade, her social studies teacher emailed me to share how proud she was of her. Louisa was one of the few students who knew the names of all twenty-five kids in the class. Two-thirds had gone to other elementary schools, and Louisa had met them only weeks before. But the memory skills weren’t really what her teacher wanted to celebrate. Louisa knew those names because she values every one of her classmates. People matter to her more than anyone I know. What if we all valued community like this? What if we valued our connection to each other, our ability to care for one another and support one another, as much as Louisa? Such a world is possible. We only have to be open to pursuing it. This better world is free from the established narratives about intelligence that the adult world creates and enforces.

  During a social studies unit on identity, Louisa’s teacher asked if she would like to do a presentation to the class on Down syndrome. I remembered Louisa’s failed attempt in third grade to share with her peers, shouting into a Zoom class on her computer screen and barely being understood. But this time, Louisa stood proudly at the front of the room speaking to them about this important part of her. Her classmates asked her questions about when she was a baby and how to be a good friend to her. They talked about other people they knew, friends and loved ones who had Down syndrome. The students, her teacher told me, were enthralled. There aren’t many eleven-year-olds who want to stand in front of the class and talk, but Louisa did it with confidence and pride. Most importantly, she showed them what she is capable of. She told her own narrative, and she told them she belongs.

  Acknowledgments

  Two amazing people found promise and purpose in this book at an early stage and saw it through to the finish line. Thank you, Heather Carr, my steady and true literary agent, who took this project up and dedicated herself to finding it the right home. That home was with Elizabeth Gassman at Diversion Books. Liz’s editorial dedication to this book was galvanizing. Her patience, insights, and challenging questions continually made this a better book. Thank you, Heather and Liz, for believing in me. And thanks to the entire team of book wizards at Diversion Books.

  Thanks to the many friends and colleagues who supported my work, let me talk through my growing understanding of IQ testing, shared their experiences with me, and read drafts from this book in earlier stages, particularly Elise Clerkin, Katie Day Good, Annie Dell’Aria, Christopher Feliciano Arnold, Jordan Fenton, Micah Fialka-Feldman, Laura Gaddis, Leigh Grossman, Michael Hatch, Ashley Johnson, Kate Kuvalanka, Lauren Markham, Tim Melley, Ricki Sabia, Bill Stumpf, and Kyle Stumpf. My dear friend TaraShea Nesbit encouraged me to write about what I couldn’t stop thinking about, and then to keep writing at every step. Thanks to Viet Thanh Nguyen for a conversation in a car ride to Cincinnati I’m sure he does not remember. It made me believe that I might be able to write this book. Thanks to everyone who participated in the Inclusive University Program at Miami University in the summer of 2019 who taught me what college could be like.

  I am grateful to the psychologists and scholars who generously answered my questions and provided opportunities for me to learn more about their work, including David Annable, Anna Esbensen, Jennifer Green, Aaron Luebbe, Vaishali Raval, Robert Schalock, Kellie Voth, and Seth Wilensky. Julie Rubin was an especially important interlocutor and resource. I am truly grateful for her time and generosity. Thanks to Cate Weir at Think College and the entire organization for their incredible work. Thanks to the Cummings Center for the History of Psychology, especially Lizette Royer Barton, for making their research materials available to me.

  I could never say enough to express my deep gratitude to the teachers who have nurtured Louisa and, in turn, taught me so much. I am in awe of grade school teachers. Their hard work is what keeps the world running. So many make a difference on a daily basis and help children become their best selves. From preschool to sixth grade, Louisa had some of the best. Thank you.

  Thanks to my husband, collaborator, and true life-partner, Andrew Casper. And thanks, of course, to Louisa, who permitted me to share some things about her life in this book, and whose brilliant spirit pushes me to imagine a better world.

  Notes

  What the Test Tests

  “not great mental development”: Bard and Fletcher, “The Right to Die,” 59–64.

  Ethan Saylor: Ethan Saylor died on January 12, 2013, in Frederick County, Maryland. Three off-duty deputies tried to forcibly remove him from a movie theater when he failed to buy a ticket. Witnesses heard Saylor being put into handcuffs and crying out. He was twenty-six years old.

  do not include a word for disability: Nielsen, 2–3.

  eating fish: Liu, Cui, Li, et al.

  “it would smell bad”: Binet, “Children’s Perceptions,” in Pollack, Brenner, eds., 107.

 

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