I was asked what happened to me so I could be studied and understood. The only problem was that the words they wrote didn’t sound like mine. I said a thing that held deep meaning, which was removed because of the concern for validity. I shared the pain, the confusion, and the challenges, all of which were spread across hundreds of others, unlike myself. I found the data and gleaned myself unique in age, in likeness, in gender- but no matter. The work was done, and the findings irrefutable. 

They spoke and shared and taught the work. Except for me, the anomaly. I watched in person just once as they discussed and revealed and astounded so many. My words, my heart, the pain resharpened- but my knowledge mattered not. I asked a question, and they didn’t recognize me. A number, not a person with whom they had spent an hour. My question was mocked as scientifically unsound, irrelevant, and uneducated. Even though I was a part of the work, the study, the data. I sat ashamed as the room full of strangers looked down on my ignorance. Being study adjacent means nothing when the numbers present a certain picture. 

Then I spoke to others, like me. We shared these feelings, these frailties, this feverish need to understand. 

But the work holds more weight. The work I was so vital to in the beginning. The work that could not be done without me. The work that begged for the deepest thoughts and feelings to reveal a universal truth only to realize that universal is easily misinterpreted, misapplied, or even mispronounced. 

My experience may have been at the heart of that work, but the work never understood the heart of my experience. And when the work was done, no one ever considered the impact on my heart. No one remembered or recognized me. No one credited me. No one checked on me, and then no one dismissed me because I didn’t fit nicely into the cleanest of numbers. Even though we’ve known the pitfalls and gaps in research for far longer than we can openly admit. Even though we know that certain people are easier to access, and perhaps that is why we access them over and over and over until they are wrung out of stories and insights. 

I am only enough to reach your saturation but not enough to speak against the tide of truth you seek. 

Research reaps what it sows, and far too often, it does not sow lived experiences into solutions that bear fruit. 

Research should be reevaluated. It should require checks and balances that ensure it is an accurate representation of meaning and not influenced by misperception. It assumes we always understand when we seldom do. How can we know a stranger in one hour’s time? How can we be so sure? Research is important and it needs to employ emerging practices that ensure respect and care for those involved. It shouldn’t speak over those who are already minoritized simply because it deems them an unworthy number. 

Lived experiences fuel research, and yet, lived experiences are often dismissed and belittled as an invalid or simply anecdotal at best. If lived experiences are nothing more than stories, why do you need our stories to conduct your research? 

You need us. We matter, even if you don’t think we add up.