In 1972, 29-year-old journalist Geraldo Rivera filmed an expose revealing the atrocities inside Willowbrook School, a state-supported institution on Staten Island for people with intellectual and developmental disabilities. Children whose only crimes lay in looking and acting slightly different from their nondisabled peers were sentenced to life in a filthy, reeking room where they huddled naked on the floor in their own feces or rocked and howled in terror or sat slack-jawed and vacant-eyed day after day while a single staff member tried to attend to the basic needs of 50.
Contrast these images with a recent New York Times photo of Rachel Handlin, 30, resplendent in a black lace top and smiling beside the field camera she used to shoot photos for her solo exhibition “strangers are friends I haven’t met yet” at New York City’s White Columns Gallery. In May 2024, Handlin became the first person with Down syndrome to earn a Master of Fine Arts degree.
The exhibition depicts other people with her genetic condition who’ve graduated from two- and four-year colleges and universities around the world, including Spain’s Pablo Pineda, 51, who left his acting career to earn a B.A. in Educational Psychology and a teaching certificate; community college graduate Kayla McKeon, 38, who — in 2017— became the first Capitol Hill lobbyist with Down syndrome; and Adam DeBacker, 27, who earned a B.S. in Theater and a recording arts graduate certificate at Missouri State University where he now works as a recording engineer.
On Thursday, President Donald Trump held a showy ceremony at the White House to mark his signing of an executive order attempting to dismantle the U.S. Department of Education (DOE). Elon Musk’s Department of Government Efficiency canceled dozens of DOE contracts, including an 11-year study of youths with disabilities that was supposed to identify which programs are effective in improving employment and educational outcomes for these students after high school. “Over 1,000 students with disabilities were supposed to receive special instruction and support in 2025 and 2026 through this study, which has now been terminated,” the nonprofit Hechinger Report notes. Earlier this month, the Department fired more than 1,300 of its employees including over half of the staff in the Office for Civil Rights—the department responsible for fielding student and parent complaints about discrimination in schools. The National Down Syndrome Congress responded by issuing this statement: “This action will have very negative consequences for students, educators, and the future of our education system, and especially students with disabilities.”
In 1975 when my brother was born in Southern California, the pediatrician told my parents that because he’d never be able to walk or talk, they should put him in an institution. “Over my dead body,” my mother replied, and brought him home and enrolled him in infant physical therapy and later, in special education classes at schools separate from the public school I attended—the only option he had back then. I’m here to tell you that he can walk and talk just fine, and also hold down a job at his local steakhouse, compete on his Special Olympics bowling and track teams, and do a spot-on impression of The Three Stooges.
Inspired by my brother, I’ve spent a year and a half researching and interviewing people with Down syndrome all over the world for my forthcoming book “Down Syndrome Out Loud: 20+ Stories about Disability and Determination” . I listened as designer Isabella Springmuhl Tejada, 28, who presented her collection at London Fashion Week, recounted how she graduated from college in Guatemala but was denied entrance into fashion schools by teachers who worried she couldn’t keep up with the curriculum. I spoke with Charlotte Woodward, who graduated summa cum laude with a Bachelor of Arts in Sociology and now works as Education Program Associate for National Down Syndrome Society. She told me how she’d been popular and happy, enrolled in general education K-8 classes until the first day of high school, when she found herself placed in a special class for people with intellectual disabilities far away from her friends. She advocated for her right to access the general education curriculum and won.
“But that’s not the reality for many people with disabilities,” she told me.
Over and over, as I spoke with the subjects in my book, I heard stories of people having to fight for the right to mainstream education, people who literally had to sue their schools for the same educational opportunities as their non-disabled friends and peers. They’ve relied on the support of investigators in the Office for Civil Rights—employees who were placed on administrative leave Friday—ironically, World Down Syndrome Day. What will become of our youngest students with Down syndrome and other intellectual and developmental disabilities without the backing of skilled and compassionate educators at the government’s highest levels?
More and more people with Down syndrome are graduating from mainstream high school, college, and university classes and going on to be of service in the world. I’m thinking of Cody Sullivan, 23, who earned a Certificate of Achievement in Concordia’s College of Education and works as a teaching assistant in Portland, Oregon. I’m thinking of Dr. Karen Gaffney, 47, who earned her teacher’s aide certificate at Portland Community College and received an honorary Doctor of Humane Letters degree from the University of Portland for her activism as president of the Karen Gaffney Foundation. And I’m picturing Mexico’s Ana Victoria Espino De Santiago, 26, who, last year, became the first lawyer with Down Syndrome. In her graduation photo, De Santiago stares the camera down, resplendent in her black satin cap and gown. She told The Latin Times that her goal is to end discrimination for people with disabilities.
We’ve come a long, long way from committing to institutions those who look and act slightly different from the majority and condemning them to a lifetime of fear and filth and isolation. Even those with the hardest hearts among us must agree that we cannot go back.
