When I read David M. Perry’s essay about navigating the disability support system for his son with Down syndrome, I felt a familiar ache, one that falls between recognition and exhaustion. His story of having to focus on deficits, failures, and “worst days” just to get basic services for his son is something many disabled people and their families understand well.
It’s a system built not around empowerment but around proving struggle. As someone with cerebral palsy, I’ve experienced that same bureaucratic system. Perry describes attending evaluations where professionals list everything his son can’t do. They would talk about how far he falls from “normal,” how delayed he is, and how much he struggles.
I remember those meetings too, but I was the one being discussed. I was the child whose milestones were marked in red ink, whose IEP (individual education plan) meetings were filled with phrases like “limited mobility,” “requires assistance,” and “below grade level in motor tasks.”
No one ever started by describing who I was. I am curious, kind, and creative. They started with what I wasn’t. That shapes you. Even as you grow up and thrive, you carry the memory of being judged against a standard you were never meant to meet.
One of the hardest parts of my school years was the constant cycle of reevaluation. Every few years, I had to sit through long, tiring sessions of standardized cognitive testing. I took two tests: the Woodcock-Johnson Test of Cognitive Abilities and the Wechsler Intelligence Scale for Children. I dreaded those days.
I’ve never liked standard measures of intelligence like IQ testing. They felt like a spotlight aimed at my struggles, while everything else was ignored.
Those tests didn’t fully reflect my intelligence. They couldn’t capture how I solve problems, how I adjust, or how I think deeply about the world. They couldn’t measure my hopes, dreams, or the quiet determination that has pushed me through every challenge I’ve faced.
In my view, the tests offered a very limited picture of my intelligence. I am more than a test score or a diagnosis. My challenges don’t make me worthless. Intelligence doesn’t equal worth.
Last month, I had my yearly reevaluation with the MassHealth PCA (personal care attendant) program. Every year, the nurse and other staff have to make sure I’m receiving the services I need. At times, it gets frustrating having to explain my needs repeatedly, as if the details of my disability reset themselves every twelve months.
During the visit, the occupational therapist asked about my health and whether anything significant had changed since my last evaluation. Fortunately, I’ve been in good health for the past year. I haven’t had any injuries or falls either, which is something I’m grateful for.
As part of the process, I described my daily routine and how my PCA assists me with activities of daily living. To be eligible for the PCA program, people must have a disability and require hands‑on care with at least two ADLs, such as toileting, bathing, or eating. In my case, my PCA assists primarily with bathing, dressing, transfers, and toileting. He also helps me with transportation and grocery shopping. These supports allow me to live my life with dignity, but the constant need to justify them can feel draining.
Perry writes about being told to document his son’s “worst day” to qualify for services. I’ve had to do that too; I was the one writing about myself. There’s something deeply dehumanizing about having to highlight your toughest moments just to get the support that lets you live with dignity. I’ve had to explain how long it takes me to get dressed, how often I fall, how fatigue affects my day, and how pain disrupts my sleep. I didn’t want to share those details, but the system wants to know how you struggle.
It’s a strange paradox: to get help, you must convince strangers that your life is harder than they realize. But to live fully, you must believe that your life is richer than they think. Perry notes that disability services are built around an “artificial economy of scarcity.” There’s this notion that resources are so limited that disabled people must compete for them to prove they’re “disabled enough,” “struggling enough,” or “worthy enough.” But scarcity isn’t a natural state. It’s a choice made by policy.
And that choice affects everything: how teachers view disabled students, how social workers assess families, and how disabled people learn to talk about their experiences. Growing up with cerebral palsy, I learned early on that support wasn’t guaranteed. It was something to be fought for. And they always focused on my limitations, never my aspirations.
Perry mentions disability advocates who imagine a different model: one where we start with a person’s goals and then build the supports around them. That idea feels revolutionary, even though it shouldn’t be. Imagine if, instead of asking what you can’t do, the system asked what you want to do and how it can help you get there.
For me, that would have meant fewer conversations about my gait and spasticity and more about my ambitions. Fewer forms about my limitations and more about my strengths. Fewer “worst day” narratives and more “best possible future” planning.
One of the most powerful parts of Perry’s essay is the quiet grief threaded through it-the tears after evaluations, the frustration of being misunderstood, the exhaustion of navigating systems that should be helping but often hinder instead.
I’ve felt that too. The frustration of being underestimated. The fatigue of constant advocacy. The grief of knowing that support often comes only after you’ve surrendered your dignity to get it.
Perry ends with a simple truth: it doesn’t have to be this hard. And he’s right. Disabled people’s lives shouldn’t have to be framed as tragedies to receive support. Parents shouldn’t have to dehumanize their children to access services. And disabled adults shouldn’t have to relive their worst days on paper just to get the services that allow them to thrive.
Source:
Perry, David M. “I Shouldn’t Have to Dehumanize My Son to Get Him Support.” The Nation, The Nation Company, L.P., 9 Mar. 2021, http://www.thenation.com/article/society/parenting-disability-down-syndrome/.