I Have a Medically Complex Child. My Child is Medically Complex.

Why Some Caregivers Choose Identity-First Language

Image created by Hillary Ramos and Midjourney AI

Between December 2023 and January 2024, we have spent 37 days in the hospital with our daughter, Marsaili. That’s over a month in total. Marsaili has Lissencephaly, which is a rare neurological condition characterized by a decreased number of folds and grooves in her brain. She also has epilepsy that is unable to be controlled by medication and numerous other health complications. Marsaili is medically complex.

I’ve been corrected on this phrasing before. I’ve had people insist that I use “person-first” language for her and that I use terms that aren’t so “grim.” They believe that by saying that Marsaili is medically complex, I am insulting her. They believe I am defining her by her illness. What they do not understand is that descriptors like these save my daughter’s life.

Person-first language, as defined by the National Institutes of Health (NIH), “is a way to emphasize the person and view the disorder, disease, condition, or disability as only one part of the whole person” (NIH, 2023) The goal is to describe conditions the person may have without using it to define who the person is. For example: