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By Azucena Garcia-Ferro, Project Coordinator, The Arc of California
I was born in April of 1988 and diagnosed with cerebral palsy in June of 1990, the same year the Americans with Disabilities Act (ADA) was signed into law. The implementation of the ADA meant that I grew up with the law’s civil rights protections in place. In many ways, I am aware of how lucky I was to have been born when I was because the disability movement had already achieved so much.
We certainly have come a long way since the days when people with disabilities were institutionalized, especially in California, with the signing of the Lanterman Act of 1969. While I do celebrate both of these landmark policies, what I celebrate the most this month is this incredible community that I am a part of, including our value, and the rich diversity we bring to society.
Being disabled means pain, struggle, joy, frustration, creativity, and hope. Having a disability is messy, complex, and very expensive. For me, no day looks the same. There are days that the pain becomes unbearable and my legs hurt so much that I cannot move, and the only thing that is left for me to do is to stare at the bedroom ceiling and cry myself to sleep. There are “better” days when I can move, but my legs are not strong enough to hold me upright, and I use a power scooter to get around. However, on these “better” days, I am unable to eat pizza at my local pizza place, which is one block away from my house. It does not have an accessible entrance because “it’s too expensive to install a ramp.”
I am proud of being disabled, even though I live in a world that was not built for me or people like me. While the world is slowly adapting to the needs of people with disabilities, there is more work that needs to be done. The ADA and Lanterman assure us that we shouldn’t have to fight for our fundamental rights; I am tired of broken promises and endless extended deadlines to receive the services we so desperately need to live a dignified and accessible life. I am tired of not feeling valued or prioritized by some policy makers.
Yet, despite the seemingly endless challenges, I take immense pride in the life I have constructed, not in spite of my cerebral palsy, but because of it. I have surpassed everyone’s expectations. I have ventured to 17 countries across the globe, assumed the role of a speaker, and I have launched my own podcast in Spanish about living with cerebral palsy. Additionally, I contribute to several advisory councils and boards, striving to influence policy changes. These personal victories are a testament to the resilience and strength that individuals with disabilities possess.
If you are an individual with a disability I encourage you to share your story about what you are proud of during this month, and always. Our stories deserve to be heard. Happy Disability Pride Month!