Blind, Multiply Disabled, and Pushed Beyond Capacity: A Personal Narrative

Published:

Content note: This narrative discusses medical trauma and institutional harm.

Preface

This is a personal narrative about my experience as a blind, multiply disabled student in a residential school setting. It reflects my lived experience and my understanding as an adult, informed by later medical and psychological evaluation.

This account is not intended as an attack on individual staff members. It is an account of systemic failure, medical misattribution, and institutional decision-making, and of the long-term impact those failures have had on my health, functioning, and sense of safety.

I am sharing this because I believe these patterns matter, not only for understanding my own life, but because I am concerned they may still affect other students.

Early Experiences and Context

I am blind and grew up in a rural area with limited access to specialized services. Beginning around age six, I attended summer programs at the Texas School for the Blind and Visually Impaired (TSBVI). These programs were not primarily about instruction for me; I received Braille education and other blindness-related training at home.

The summer programs mattered because they provided something else: community. I was around other blind children, in an environment where my blindness was understood and unremarkable. Those experiences were largely positive and did not cause harm.

I began attending TSBVI as a full-time residential student for high school at age fourteen.

High School: Early Stability

For the first couple of years of high school, my experience at TSBVI was mostly positive. I lived in a dorm with other students, had structure, and was not yet being pushed aggressively toward adult transition or independence benchmarks.

At times, expectations felt high or overly rigid, but there were buffers: peer support, routine, and a contained environment. I was able to function within this structure, and I did well academically.

At this stage, my needs were consistently framed as blindness-related. Neither I nor my family were given reason to believe that anything else was going on.

Medical Harm and Misattribution

When I was sixteen, I experienced severe head and eye pain. This was initially ignored and later misdiagnosed as glaucoma when the severity could no longer be dismissed. In reality, I was experiencing idiopathic intracranial hypertension (IIH), a neurological condition.

Because of the misdiagnosis and the intensity of the pain, light sensitivity, and vision changes from one day to the next, I ultimately had my eye surgically removed. After I healed, I returned to school under the assumption, shared by staff, that the medical problem had been resolved.

It was not.

The underlying neurological condition was never properly identified or treated. From that point forward, ongoing pain, neurological symptoms, and reduced tolerance for stress and demand were consistently interpreted as psychological, behavioral, or blindness-related issues.

Transition Pressure and Collapse

At eighteen, I was placed into the EXIT transition program. This was the same year I underwent what I believed at the time was a comprehensive autism evaluation. I was diagnosed with PDD-NOS (now referred to as Autism Spectrum Disorder) and the school claimed they had done a full assessment of my needs.

The transition program dramatically increased demands related to independence, self-direction, and performance, while simultaneously reducing supports. I repeatedly communicated that the expectations were too much and that I was struggling physically and cognitively.

My body began to collapse under the strain. I developed symptoms consistent with fibromyalgia and severe nervous system overload. Instead of slowing down, reassessing medically, or increasing support, pressure continued.

The evaluation conducted that year did not include comprehensive neuropsychological assessment. I later learned that the autism diagnosis given to me (PDD-NOS) functioned largely as a catch-all and was treated differently and with fewer supports, than a full autism diagnosis. The testing approach also mixed child and adult instruments in a way that later evaluators have told me was inappropriate. Neuropsychology should have been involved much earlier. This explains why many of my needs were missed. As a result, I have been unable to access appropriate supports. I am now seeking a full reevaluation.

Despite this, the institution treated my difficulties as failures of coping or compliance rather than signs of serious neurological and developmental mismatch.

Withdrawal of Support and Punitive Actions

After I could no longer meet the EXIT program’s demands, I was sent home with no meaningful support in place.

In addition to being removed from the program:

These actions occurred even though the evaluation conducted at the time recommended more support, not less.

The message I received was clear: once I could no longer perform independence as defined by the institution, I was no longer worthy of recognition, resources, or care.

What Was Missed

I was diagnosed as a baby with optic nerve hypoplasia. I did not learn until adulthood that this diagnosis is commonly associated with septo-optic dysplasia, a condition that warrants neurological and endocrinological evaluation and monitoring.

None of this was pursued when I was a child. Neurology and endocrinology were never meaningfully involved. Everything was assumed to be blindness-related. I was my parents’ first child, so I do not blame them for not knowing better, but the medical system also failed me.

Only in my thirties did I begin to understand that many of my lifelong difficulties, including executive dysfunction, fatigue, stress intolerance, and neurological symptoms, were likely not character flaws, motivational failures, or psychological resistance, but the predictable result of untreated neurological and developmental conditions compounded by institutional trauma.

Long-Term Impact

I am now thirty-four years old. It is 2026.

I continue to struggle with severe executive dysfunction and task initiation. Efforts toward independence are often met not with empowerment, but with shutdown, because my nervous system learned, repeatedly, that trying harder led to pain, punishment, and loss.

This is not a failure to apply tools or strategies. It is the long-term impact of being pushed beyond capacity, disbelieved, and abandoned at a critical developmental stage.

Why I Am Sharing This

I am not sharing this to relive the past or to assign individual blame.

I am sharing it because I am concerned that the same philosophical framing, treating blindness as a single-axis explanation and prioritizing independence without sufficient attention to multiple disabilities, neurological safety, or trauma, may still be causing harm.

If this happened to me, it may be happening to others.

I believe that blind, multiply disabled students deserve environments that prioritize safety, accurate medical understanding, and definitions of success that include interdependence and support, not punishment for collapse.

This is my story. I am still living with its consequences. It does not need to be this way for others.