Blog Post

On January 24, it will be twenty years since I woke up in a hospital bed with a new reality: quadriplegia, breathing, and speech disability. That day, and everything that followed, was not the result of a single moment or decision. It was shaped by a series of medical choices, conversations, and assumptions, made by other people while I was still a child, just 10 years old.

Sometimes the memory arrives all at once. Fluorescent lights. Overlapping voices. Paralysis. Feeling of fear.The sense that life had split into two distinct segments: before and after. Other times it sits quietly in the background, present in every interaction I have with the world as a disabled person.

Living with disability is not a single event. It is a long-term reality shaped by decisions that ripple outward over decades.

The Day Everything Changed

As a child, I could not decide what came next. My body became a site of urgency, treatment plans, and professional debate. My family moved through hospitals, rehabilitation centers, and appointments while I was carried along by systems designed to act quickly, not necessarily thoughtfully.

There was little room for fear, anger, or uncertainty. There was even less room for being a child.

This is not a criticism of my parents; they were not entirely to blame. They were navigating impossible circumstances with limited information and enormous pressure. It is, however, a reflection of how medical systems often prioritize intervention over understanding what a disabled child’s life might actually look like long term.

When Decisions Are Made for Disabled Children

Medical Authority Versus Lived Reality

One doctor told my family there was nothing left to do except keep me comfortable. Another proposed surgery and chemotherapy. These options were presented as technical possibilities, not as decisions with lifelong consequences.

The long-term impact of disability was rarely discussed in meaningful terms. Quality of life was implied rather than examined. Autonomy was deferred indefinitely.

In medicine, “best care” often refers to technical skill or reputation. It does not always include disabled adulthood, long-term access needs, or the emotional reality of living in a body shaped by those early decisions.

What “Best Care” Often Misses

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As a child, my world narrowed to goals, milestones, and assessments. Everything was framed around improvement and effort. There was little space for acceptance, adaptation, or asking what kind of life could still be meaningful without chasing normalcy.

The system is designed to pursue cures. It is far less prepared to support disabled people than they are.

Anger, Loss, and the Stories We Are Expected to Tell

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I carry anger. Not constantly, and not in a way that defines my daily life, but enough to shape how I understand the past and how I approach my work now.

That discomforts people. Anger does not fit neatly into narratives about resilience or overcoming. Disabled people are often expected to present gratitude, growth, or inspiration. Honest reflection is treated as negativity.

Why Resilience Narratives Fall Short

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Resilience is not inherently harmful. The problem is when it becomes the only acceptable story.

It leaves no room for grief.
No room for regret.
No room for asking whether different choices might have led to a different, still valuable life.

Disabled experience is complex. Flattening it into motivation erases the reality many of us live with.

Living With Ongoing Grief and Depression

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Alongside anger is depression. It appears unexpectedly, shaped by loss and by the continual pressure to become “normal” and improve adaptation without complaint. The world celebrates dramatic comebacks. It is far less comfortable with sustained, unglamorous honesty.

Pretending these realities do not exist does not protect disabled people. It isolates us.

What Disabled People Actually Need

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Disabled people deserve honesty and real choices.

When decisions are made for disabled children, especially under medical urgency, the question should not only be “How do we fix this?” It should also be:

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• Are we prepared for outcomes we did not hope for?
• Can we accept disability as a valid way of living?
• Are we building support around who this child is becoming rather than who we want them to be?

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Sometimes the most responsible choice is not to intervene aggressively, but to create space for adaptation, autonomy, and quality of life.

Lived Experience as Professional Expertise

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After twenty years, I understand that my anger is not only personal. It is analytical.

I have lived inside systems that failed to consider long-term access. I have experienced how early decisions echo through adulthood. That perspective now informs my professional work in accessibility, consulting, and evaluation.

Lived experience is not anecdotal. It is a sustained interaction with systems over time. It reveals patterns that guidelines alone cannot capture.

This is why lived experience must be treated as professional expertise, not as supplemental feedback.

A Question for Parents, Providers, and Policymakers

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Looking back, I wish more adults in the room had said, “We do not know what comes next, and that is okay. We will support you either way.”

Survival is not the only metric that matters.

Accessible, affirming support is not about endless therapy or erasing disability. It is about meeting people where they are, respecting autonomy, and investing in livable futures.

For parents, allies, and professionals walking this path: ask different questions. Build different systems and really think through all the possible outcomes, especially when making a life-altering medical decision on your child’s behalf!