Today, I want to discuss bureaucracy, particularly in the context of disability, using my experience at Duke as an example. My case isn't unique, but it highlights broader issues about human capital, productivity, caring, and bureaucracy.
I have a severe disability. My right hand has very limited movement; I can lift my fingers, but they fall back down. Typing is painful and slow—I can manage about a page to a page and a half a day before the pain becomes unbearable. My left hand isn’t much better; only three fingers move well. Writing has become increasingly demanding over the years due to the rise of emails and formal paperwork. Every study and reimbursement request involves extensive documentation.
About three years ago, Duke increased its demands for reports on research activities. I requested extra time due to my disability but was denied. They directed me to apply for accommodation through a link, which has led nowhere after more than three years. Despite following the process and increasing my pain medication to meet deadlines, I received no accommodation except for an office with better temperature control—a small relief given my burn scars' sensitivity to temperature.
When I joined Duke, I requested a good research budget and a full-time assistant due to my hand difficulties. The dean agreed initially, but as bureaucracy grew, the disability accommodation office claimed they weren't obligated to provide an assistant despite my prior agreement.
This ongoing struggle for accommodation feels like being let down by those who should support me—the university administration and the disability office. Instead of fostering productivity and efficiency, they seem focused on minimizing their efforts and legal obligations.
This isn't just about my personal experience; it reflects a larger issue within bureaucratic systems. Institutions should support their members, especially those with disabilities, to be productive and effective. Yet, the current system feels antagonistic rather than supportive.
After more than three years of this battle, I've only managed to move offices and receive numerous letters. I'll update in another three years if anything changes. We need systems that recognize and support us within our organizations—where someone on the other side genuinely wants us to succeed.
Here's hoping for a future where such systems exist.
