New York Must Recognize Spina Bifida as a Development Disability

Opinion Advocates for ideas and draws conclusions based on the author/producer’s interpretation of facts and data.

We are part of The Trust Project

I am writing this letter as a New Yorker and as someone who has lived with spina bifida for as long as I can remember.

New York is a diverse, progressive state, celebrated for its commitment to equality and inclusivity. Yet, it’s time we address a significant oversight – the omission of spina bifida from the official definition of developmental disabilities.

Spina bifida is a neural tube defect that affects the spine and can lead to lifelong challenges. It impacts mobility, can cause severe health issues and often involves surgeries and therapies throughout one’s life. By recognizing spina bifida as a developmental disability, New York can take a crucial step toward ensuring that those of us living with it have access to the support and services we require.

This change isn’t just about words on paper; it’s about acknowledging the unique hurdles we face daily. It’s about ending the isolation and ignorance that often shroud spina bifida. It’s about reducing the stigma and misconceptions that have held us back for far too long.

By revising the definition, New York can help foster understanding and empathy within our communities. It can also pave the way for increased funding and research, leading to better treatment options and improved outcomes for those living with spina bifida.

New York has always been a trailblazer in the fight for civil rights and inclusivity. Let’s continue this legacy by adding spina bifida to the definition of developmental disabilities, demonstrating our commitment to supporting all of our residents, regardless of their abilities.

Kathleen Watt
Intern, Spina Bifida Association of New York State
Scotia, N.Y.

We'd love for you to support our work by joining as a free, partial access subscriber, or by registering as a full access member. Members get full access to all of our content, and receive a variety of bonus perks like free show tickets. Learn more here.