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The Disabled Mindset: Embracing My Disability Identity

by Sarah Napoli, Learning Services Director, Disability & Philanthropy Forum
March 6, 2023

In 2013, I was misdiagnosed yet again. This time they (the elusive “they” in the medical industrial complex) said I had Meniere’s Disease, an autoimmune condition that causes hearing loss. It wasn’t until 2018, when my hearing loss became profound, that they would find the auditory schwannoma (a tumor) in my right cochlear. And the only reason this was discovered is because the tumor had grown, causing me to collapse on 5th Avenue in New York City on Easter Sunday. New Yorkers, as they always are, were amazing in a crisis. Supposedly, five strangers (who I never got to thank) came to my aid as I experienced a grand Mal seizure that caused severe head trauma and increased my consistent migraines. I woke up in the hospital, battered and bloody, and have been on a healing journey ever since.

I live with a slew of chronic conditions that have all been misread, misinterpreted, and treated with a cocktail of prescriptions that come with their own side effects. It has been this way since I was a child. I’d miss weeks, and sometimes months, of school. When I was in college, I missed almost an entire semester because I had mononucleosis that infected my pancreas. I lived with long mono for almost a decade, well before we ever spoke of long COVID. I felt alone in my pain and frustration, even though I grew up surrounded by disability within my family.

Frida Kahlo once said, “Burn this Judas of a body.” On most days, this was how I interacted with my own disabilities. I was cynical, often without hope, and found myself in and out of therapy, living with depression and anxiety, in fear of what would happen next.

Finding a disabled community saved me. I felt seen, valued, cared for, and heard. Most people perceived my disabilities as deficits. They would express pity or herald me as an inspiration. But the disability community mentored me and gave me the tools that medical professionals could not provide.

For the past twenty years, I have nurtured my disability identity and pride. My disability is not something I have overcome; it is an asset. It has made me agile, flexible, and adaptable. But disability has so often been missing from conversations in the spaces I’m part of. I have been an educator for over 20 years, mostly in higher education, in roles focusing on diversity, equity, and inclusion, and accessibility. I have worked at Big Ten research institutions, community colleges, and liberal arts schools–all of them lack a greater understanding of disability as part of DEI work. And in the past few years, as I’ve worked in philanthropy, I have witnessed the same pattern. Disability is seen through the lens of charity, as something that abled people can help fix. My goal is to shift this mindset.

Folks often comment on my constant optimism and positivity. (I even have a large Doctor Who quote tattooed on my back to cement this attitude.) But I often respond with “I am always angry.” (This is a callback to the Hulk and my obsession with comics.) I have learned to use my anger as a tool. It ignites my passion to educate and facilitate dialogue. It keeps my fire burning. As Angela Davis once said: “No movement is possible without hope.”

Throughout the work I’ve done, the universal aspects of disability culture that continue to come up are the fight for justice, the fight for independence, and the need to advocate for disability within multiple systems of oppression. There is no way we can separate disability from race, from economic status, from gender, from sexual orientation, from an overarching system of white supremacy. Philanthropy has an important role in addressing these inequitable systems. We must embark on a journey to better understand how our own policies and practices are perpetuating ableism. I look forward to going on this journey with you all as we create new learning pathways for our network of grantmakers – together.