When she was in fourth grade, Penny was supposed to do a project on a “big question.” She decided to learn about Down syndrome. Later, after she made her presentation, her teacher told me that the other kids in her class expressed confusion. They didn’t know Penny had a syndrome. They didn’t know she had a disability. She was just Penny.
Let’s be clear: At that point, Penny was pulled out of class for math instruction. The classroom had both an aide and sometimes an additional teacher to serve Penny and other students with disabilities. She wore braces on her ankles, glasses, and left school for another surgery to get tubes in her ears on a semi-annual basis. She met with the occupational therapist, physical therapist, and speech therapist at school. She had all the distinctive physical characteristics of a person with Down syndrome.
I tell that story because it signals one of the triumphs of special education in America over the past few decades. It’s not only that Penny received the education she deserved and now continues to flourish as a young adult who loves reading and writing and hanging out with her friends. It’s not only that she has her sights set on college and employment and living with friends and contributing to her community. It’s also that her entire school system—all those other students and teachers and aides, the people who worked in the cafeteria, the custodians and public safety staff—all of them assumed a little girl with Down syndrome belonged in their midst.
Only a few decades ago, before the Individuals with Disabilities Education Act legislated the inclusion of kids like Penny in classrooms, she had no right to be included in these classrooms alongside her typically developing peers.
Last week, the Trump administration announced plans to transfer the administration of grants under the Individuals with Disabilities Education Act (IDEA), as well as various aspects of Special Olympics in schools to the Department of Health and Human Services.
Disability Scoop quotes Chad Rummel, CEO of the Council for Exceptional Children:
“IDEA is an education law — not a health law — and moving it to the health department is more than a bureaucratic change; it segregates special education from K-12 programs and signals a move toward a medical model that views students as patients rather than as learners with strengths, potential and belonging.”
Penny’s fourth-grade classmates didn’t think of her as someone on the outside. They didn’t think of her as a set of medical conditions or problems. They didn’t think of her as a patient. They thought of her as a classmate, a student, a friend. They thought of her as Penny.
We don’t know how HHS plans to administer the grants for students with disabilities. We do know that the Trump administration has repeatedly pursued policy changes and restructuring efforts that disability advocates say weaken programs and civil rights protections for people with disabilities and their families. We do know that the Director of the Health and Human Services Department, RFK Jr., has demonstrated his own belief that disabilities like autism are problems that need fixing, and that they are medical in nature. We do know that this administration is moving towards greater institutionalization/segregation of adults with disabilities. We do know that President Trump and various other administration officials have made disparaging remarks about people with disabilities.
And we know that a generation of young people has grown up with peers with disabilities in their midst. Even if and as the national education system pulls back on disability rights in the classroom, we can work on a local level to insist that our kids receive their education together. We don’t need a return to a medical understanding of disability that reduces kids to their diagnostic criteria, especially in an educational setting. We need communities of learning, care, friendship, and connection.
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Amy Julia Becker desires to challenge assumptions about the good life, proclaim the inherent belovedness of every human being, and help us envision and build a world of belonging where everyone matters. Amy Julia invites people to reimagine the good life through her writing and speaking on disability, faith, and culture. She is the author of several books, including To Be Made Well, White Picket Fences, Small Talk, and A Good and Perfect Gift. She is a guest opinion writer for national publications and hosts two podcasts: Take the Next Step and Reimagining the Good Life. Becker is a graduate of Princeton University and Princeton Theological Seminary (MDiv). She is a member of the Disability Ministry Network and the Alliance for Disability Justice and Ethics in Reproductive Genetics. She lives with her husband and their three children in western Connecticut.
