The Ones We Sent Away

Jennifer Senior’s aunt Adele was institutionalized as a toddler because of an intellectual and developmental disability. For the September 2023 issue, Senior considered the life Adele could have lived.

Jennifer Senior’s story about her aunt’s institutionalization struck a deep chord with me. My family has a similar story, made worse when I found out that I was the reason my sister was sent to a state “school.” My mother cared for her oldest child, who was developmentally delayed, for the first two years of her life. But in 1950, she surrendered her to the state under intense pressure from family members, who felt that my expectant mother wouldn’t be able to handle a newborn—me—and a high-needs daughter at the same time. My sister languished at the “school” for many years and never learned to walk. She died shortly after the institution was closed; an exposé had made public its shortcomings. I met my sister only once, when I was in college. I’ll never forget how happy she seemed having somebody watch her eat lunch. She never took her eyes off me; it was like she knew who I was. Hardly anyone remembers her now, but I will, always. Her name was Cheryl.

Wayne April
Pasadena, Calif.

I felt tears welling up as I read Jennifer Senior’s moving story about her aunt Adele, and by its conclusion, they ran freely.

My older brother, Larry, shares a birthday with Adele. He, too, was born with severe disabilities; in fact, at birth, the doctors told my parents that he would not survive more than a few weeks.

Larry proved them wrong—repeatedly. He recently celebrated his 47th birthday. My parents did not institutionalize him, but cared for him through dozens of complex surgeries, years of developmental frustrations, and countless instances of unfeeling relatives asking why they bothered to keep him. They had two more children after Larry: myself and my younger brother. Putting in the emotional, physical, and logistical labor to care for a child with special needs while maintaining the bandwidth to meet the needs of their other children was a significant challenge for them.

My younger brother and I have felt the repercussions of that challenge for decades now, for both good and bad. Larry, more than anyone else, has made me the man I am. But to this day, when I hear about a family raising a child with special needs, I feel obligated to stress the importance of making sure that their other children are given as much attention and love as possible.

Ryan Wagman
Northbrook, Ill.

I would like to share my family’s experience, which cuts against the current prevailing sentiment that the best place for children with severe developmental and behavioral disabilities is their family’s home.

My stepson J. has a number of diagnoses, all of which fail to describe the problems he lives with. I entered his life when he was a little over 2 years old. He’ll turn 9 in a couple of months. J. isn’t nonverbal, but his ability to meaningfully communicate is quite poor. Lately, you can catch him sitting in the living room before dawn, wearing his headphones and singing along to the Sesame Street spin-off The Furchester Hotel at an ear-splitting volume. His ecstatic refrain fills the house over and over as he rewinds the clip to the bit he loves. Half of my heart floods with his joy, but the other half sinks with the woe of a mom whose babies are going to be up an hour early. He isn’t potty-trained and uses diapers. Some days, he prefers to take off his clothes and use the floor.

J. has the highest highs and the lowest lows. He loves football. He loves going to church and, afterward, Runza (“But not the drive-through,” he reminds us). No one loves a birthday party more than J., as long as he gets to blow out some candles. But, in general, it doesn’t take long for him to grow frustrated, and for his frustration to turn into violence. He bites, scratches, punches, kicks. He pulls hair. He slams his head into the ground, the walls, the windows. He hurts the dogs. He’s broken the glasses on a teacher’s face and the television on the wall. He’s sent two adults to the emergency room. Our nanny stopped caring for him after she was injured. He was dismissed from his specialized before- and after-school care program. He can still attend school, but who knows how long that will last?

His older brother tries to keep quiet about the suffering he experiences. He will occasionally admit that a mark on his skin is a scratch or bruise from trying to escape J.’s aggression. He recently mentioned that he would like it if J. would wear clothes more often and stop going to the bathroom on the carpet. He prefers to stay home and avoid the gawking public. J.’s two younger half-siblings are frightened by the outbursts, but so far are too young to really understand. I often wonder what terrible choice I will have to make if one of them is severely hurt.

J. has progressed to a point where he no longer fits safely in the context of a family. We hold our breath, hoping each day that this won’t be the time things really go bad. But at any suggestion that it might not be safe for J. to live in our family home, we are told that, no, the best place for any disabled child is in the family home. Because, you know, the Bad Old Days.

At first, this felt like it must be true. Over time, however, it has come to feel like a disingenuous strategy to keep care cheap. The conditions at many of the institutions where children like J. were once warehoused were horrific, as Jennifer Senior makes clear in her article. But that doesn’t mean institutional care can’t work, or be the right solution for some children—which Senior also acknowledges.

J. needs specialized care. He needs an adult to make him their sole focus from when he wakes up until he goes to sleep. It’s a full-time job—not something a parent can easily do while maintaining a career, a marriage, or a relationship with their other children. If there were a willingness to make the necessary investment, I imagine we could develop a system of high-quality care for children with serious behavioral disorders that meets each child and family where they are, providing the right care in the right setting at the right time. In the meantime, we feel like we are failing J. and our other children. The implied message we hear from many we encounter is that if we were able to love him better or be more dedicated, we could do it. We feel overwhelmed all the time, helpless and inadequate. We are old beyond our years and carry the special weariness of the chronically heartbroken.

Name Withheld by Request
Omaha, Neb.

I began volunteering with individuals with disabilities as a junior in high school in 1979. In 1982, it became my career. A significant part of my job in the early years was helping facilitate the deinstitutionalization of individuals with developmental disabilities in West Virginia. I’m proud that West Virginia was among the first states in the nation to fully close its institutions; even so, I witnessed untold horrors in those places.

Then, in 1993, my son, Benjamin, was born with Down syndrome and autism-spectrum disorder. What had been a career choice suddenly became my life 24/7. Though the institutions no longer exist, significant perils remain: Individuals with disabilities are much more likely to be victims of abuse or neglect than nondisabled individuals. Across the country, disabled adults lack housing, meaningful jobs, and support services.

As long as we are able to care for Ben, he will reside with us. The day I can no longer care for him will be the worst day of my life. Even though Ben will go to live with his sister, I know I’ll feel as though I failed him.

I’m now 60 and have been in the field for more than 40 years. I’m still working with the orneriest of the ornery, and I’m still loving it. We must never forget the evil that occurred and continues to occur to individuals with developmental disabilities, our most vulnerable population. A sincere thanks to Jennifer Senior for reminding us.

Kent Moreno
Shepherdstown, W.Va.

Behind the Cover

In this issue’s cover story, The Atlantic’s editor in chief, Jeffrey Goldberg, profiles General Mark Milley, the retiring chairman of the Joint Chiefs of Staff. For our cover image, the war photographer Ashley Gilbertson captured Milley outside Quarters Six, the chairman’s residence in Arlington, Virginia. Quarters Six looks out onto the Capitol from Joint Base Myer–Henderson Hall, originally built to defend Washington, D.C., from the Confederate army during the Civil War. Gilbertson was a finalist for a 2022 Pulitzer Prize for his photograph of the Capitol Police officer Eugene Goodman as he defended the building from insurrectionists on January 6, 2021.

— Bifen Xu, Photo Editor

This article appears in the November 2023 print edition with the headline “The Commons.”