As someone with cerebral palsy, I often feel dehumanized. For as long as I can remember, I’ve had to justify my existence and the support I need to navigate the world. During my childhood, every specialized service came with another evaluation, another test, and another reminder that I was measured against standards that had never considered someone like me.
Early on, I had enough reports and evaluations written about me to fill a book. I was the child whose milestones were marked in red ink, whose IEP meetings focused on terms like “limited mobility,” “requires assistance,” and “below grade level in motor tasks.”
My progress was documented, sorted, and measured. Rarely did anyone understand it for what it really was. I was a child trying my best in a system that acknowledged my challenges more than my humanity.
No one ever began an evaluation by saying who I was. I am curious, kind, and creative, but the reports always started with what I wasn’t. That affects 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 toughest parts of my school years was the never-ending cycle of reevaluation. Every few years, I went 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 tests. They felt like a spotlight on my struggles while everything else about me faded away. Those tests never fully captured the range of my intelligence.
They couldn’t capture how I solve problems, how I adjust, or how deeply I think about the world. They couldn’t measure my hopes, my dreams, or the quiet determination that has helped me through every challenge I’ve faced.
Medical care became another place where I felt dehumanized. I grew up surrounded by acronyms: CP for cerebral palsy, PT for physical therapy, OT for occupational therapy, DME for durable medical equipment, PCA for personal care assistant, ADLs for activities of daily living, ROM for range of motion, and PCP for primary care provider. They were not just letters; they were the language adults used while talking about me, even when I was right there in the room.
I remember being a child in exam rooms, listening to doctors and therapists speak in shorthand, treating me like a chart instead of a person. “CP with limited ROM,” “needs DME,” “PCA hours for ADLs.” They were summarizing my entire life with short phrases that made me feel like a collection of symptoms rather than a child who loved baseball and reading.
Even as an adult, that feeling has not completely vanished. I still go to appointments knowing I will be reduced to medical language. They will describe me in terms of what my body cannot do, what I struggle with, and what needs to be managed.
I understand why this language exists. However, it is strange to hear my life turned into codes that fit neatly into a chart. In reality, living with a disability is not neat at all.
What is hardest is the constant retelling. Every new specialist, equipment evaluation, and insurance request means starting over. I have to explain the same limitations, the same needs, and the same daily realities as if my disability might have magically vanished since the last visit. It is tiring to keep proving what I live every day.
Sometimes I wish medical appointments felt more like conversations and less like audits. I wish someone would start by asking who I am, not what is wrong with me. I wish the first thing written in my chart captured something true about me, such as my curiosity, my humor, or my stubborn determination, instead of “patient presents with spasticity.”
Adulthood hasn’t freed me from this exhausting cycle of proving my humanity. Just last month, I had my annual reevaluation with the MassHealth PCA program. Each year, a nurse and other staff come to confirm that I still qualify for the services that I need. It’s frustrating to explain my needs over and over, as if the details of my disability reset every twelve months.
During the visit, the occupational therapist asked about my health and whether anything significant had changed since my last evaluation. Thankfully, I’ve been in good health this past year. I haven’t had any injuries or falls.
As part of the process, I shared my daily routine and how my PCA supports me with daily activities. To qualify for the PCA program, a person must have a disability and need hands-on help with at least two ADLs (activities of daily living), such as toileting, bathing, or eating.
In my case, my PCA mainly helps with bathing, dressing, transfers, and toileting. He also assists with transportation and grocery shopping. These supports allow me to live with dignity and independence. Still, the constant need to justify them can feel exhausting.
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.
If that weren’t enough, getting the equipment I need involves its own complicated process. To receive durable medical equipment, I must contact my physiatrist and meet with my physical therapist, who must document what my body can and cannot do.
After that, I wait for my insurance company to decide. The approval process is rarely quick. It’s frustrating to know that people who have never met me make decisions that directly impact my health and quality of life. Can you imagine having to justify your need for a walker or a power wheelchair just to avoid being stuck in bed all day?
About a decade ago, I began receiving SSI, which was supposed to provide stability and recognition of the financial barriers that come with disability. Instead, it became another arena where I had to justify my existence. Every form, every review, every income review felt like a reminder that my security depended on whether strangers believed I was still disabled enough, still limited enough, still struggling enough to qualify.
What all these evaluations, forms, and tests miss is the fact that my life cannot be reduced to checkboxes, test scores, or descriptions. The systems designed to support people like me often forget to see us as human beings.
Yet, despite the constant scrutiny, I continue to build a life defined not by limits but by resilience, creativity, and knowledge. I’ve learned that my worth has never depended on how well I fit into someone else’s standards. It comes from who I am, how I navigate the world, and the strength it takes to keep affirming my humanity in places that ignore it. I am more than a diagnosis or a test score. I am a whole person; I deserve to be seen that way.