Privileged Defects

We’ve had some feedback that my poem Let Us Be Clear feels like a caveat to the book, even undermining our story (we initially placed it in the prologue but moved it to the end). While my birth defect (which has a prevalence of 1:1,600 births) dramatically shaped our lives and we wrestled with the medical system for decades, we have to place ourselves on the map.

Without doubt, we benefited from several facts of our situation in the early 1970s: family connections within the medical system, caucasian in Ohio, middle class and insured, two-parent household, and we could easily add being in a country with advanced surgical care. I’m sure there are more.

So many other newborns and families have been dealt the same birth defect and also faced greater systemic hurdles to overcome – true then and still true today. Our story is not less than these other stories and lives being lived in greater difficulty, it is just ours. I can’t be anything other than grateful for all of the advantages we had, but I absolutely recognize how our layers of privilege created those advantages.

If none of our medical storylines seem relatable with the experiences of a given reader, then I would highlight another takeaway. In writing this over several years, we shared and discovered how we were individually and jointly impacted by moments and events. This was an enriching experience for us as a mother and son, and which any adult can replicate with a family elder. There may be more healing and power in those conversations for people and families who overcame more than we had to.

(featured image downloaded from https://belong-health.com/news/bubbles-of-healthcare-privilege)