Submitted by Rob H from Colorado

Perspective: Parents

My daughter Isabelle is blind.

That sentence seems simple now. For years, the systems responsible for educating her failed to fully recognize what it meant.

Isabelle was born with optic nerve hypoplasia. She is legally blind, autistic, and has epilepsy. She reads braille, uses assistive technology, and travels with a long white cane. She is intelligent, funny, determined, and far more capable than people sometimes assume.

But early in her education, she was not properly identified or counted as a blind student.

That was not merely a paperwork error. When a system does not accurately recognize a child’s disability, it does not provide the specialized instruction, qualified professionals, accessible materials, or high expectations that a child needs. The consequences follow the student far beyond a single classroom or school year.

Our family had to learn that access is rarely handed to you simply because the law says it should be.

We learned the language of IEPs, evaluations, procedural safeguards, prior written notice, assistive technology, braille literacy, orientation and mobility, and the Expanded Core Curriculum. We learned to arrive at meetings prepared, ask direct questions, document everything, and refuse to let low expectations masquerade as compassion.

Eventually, I became a certified IEP facilitator and an advocate for other families. I did not choose this work because navigating broken systems was enjoyable. I chose it because once you understand how these systems operate—and how easily families can be overwhelmed by them—you cannot look away.

I also brought my own history into the work.

I spent part of my childhood in foster care and group homes in Western Colorado. I know what it feels like when decisions are made about you by people who may never truly know you. I know how easily a person can become a case number, a diagnosis, a budget line, or a problem to manage.

That experience taught me something I now carry into every advocacy space: systems must be judged by what happens to the people with the least power inside them.

Today, Isabelle is a young adult building a life defined by her own goals. She has completed extensive braille training, uses technology such as JAWS, Voiceover, a refreshable braille display, and the APH Monarch, and continues developing independent living and travel skills. She has learned to schedule transportation, navigate her neighborhood, prepare for appointments, and advocate for what she needs.

These accomplishments belong to her.

As her father, I can support her, remove barriers, and insist that systems fulfill their responsibilities. But I cannot—and should not—speak over her. Parenting a young adult with disabilities requires an important shift: advocacy must increasingly create room for the person’s own voice, choices, risks, and future.

That belief is taking us somewhere new.

Soon, Isabelle and I will travel from Western Colorado to Washington, D.C., as part of a small delegation of self-advocates and professionals in blindness, low vision, and deaf blindness. We will meet with national leaders, disability organizations, and policymakers to talk about the barriers students and families continue to face.

For me, this trip represents years of learning how systems work—and how they fail.

For Isabelle, it represents something even more important: the opportunity to enter rooms where decisions are shaped and bring her own experience with her. She will carry the APH Monarch, a multiline braille device that demonstrates what becomes possible when accessibility, innovation, and high expectations come together.

We are not traveling to Washington to ask for sympathy. We are going to demand attention to solutions.

We will talk about braille literacy, accessible technology, qualified teachers, orientation and mobility, transition services, meaningful family engagement, and the importance of including disabled people before policies are written—not after decisions have already been made.

Too often, disability systems reward compliance instead of self-determination. People are invited to meetings after the real decisions have already been made. Materials are called accessible only after the event is over. Families are asked for “input,” but never told how that input affected the outcome. Individualized services are reduced to formulas, caps, and administrative convenience.

A seat at the table is not meaningful if the person cannot access the agenda, understand the choices, influence the decision, or challenge the outcome.

Real inclusion begins earlier.

It begins when accessibility is built into the first draft rather than added after someone complains. It happens when professionals presume competence, provide information in the person’s preferred format, and treat lived experience as expertise. It happens when families and disabled people are involved in designing the process—not merely reacting to it.

I have also learned that effective allyship does not require knowing everything.

A real ally listens without becoming defensive. They ask what access looks like instead of assuming. They acknowledge mistakes, correct them, and change the process so the same barrier does not harm the next person. They understand that accessibility is not a favor, and inclusion is not an act of charity.

Most importantly, they stay engaged after the meeting, campaign, training, or public recognition ends.

My advocacy now stretches from individual IEP tables to state Medicaid policy and national conversations about blindness, special education, and disability rights. The settings change, but the central question remains the same:

Are we building systems around the convenience of institutions, or around the dignity, potential, and self-determination of people?

Isabelle’s life is not a story about overcoming blindness. Blindness is part of who she is, not the tragedy in her story.

The barriers are the inaccessible materials, delayed services, low expectations, rigid policies, and decisions made without the people most affected. Those are not inevitable features of disability. They are choices—and different choices can be made.

When Isabelle and I arrive in Washington, we will carry more than our luggage. We will carry the experiences of families who have sat through meetings feeling unheard, students who received accessible materials too late to participate, and young people whose potential was limited by someone else’s assumptions.

We will also carry hope.

We believe systems can change. We believe lived experience belongs in the rooms where policy is made. We believe the next generation should not have to fight every battle all over again.

Our story is still being written. It includes frustration, persistence, growth, and plenty of moments when Isabelle has shown us that independence does not mean doing everything alone. It means having meaningful choices, reliable access, appropriate support, and the freedom to direct your own life.

Understanding can drown out stigma, but only when we are willing to listen closely enough to be changed.

Every person deserves to be counted.

Every voice deserves access.

And every system can do better.

—

Rob Harris