The pediatrician hinted about a disorder while I sat in a chair and he stood over my son’s incubator. I left confused and in tears.⠀
The official diagnosis was handed to me without support in the NICU. I held my son, the doctor casually leaned on the empty incubator—all within earshot of other parents. I left scared and in tears.⠀
The geneticist bleakly blurted details about life expectancy if we didn’t do this or that. I left shaken and in tears.⠀
At one of our rehabilitation meetings, we were greeted by eight adults—none of whom I knew would be present ahead of time, nor did they introduce themselves to me on the spot. They poked and prodded as my baby cried hysterically until I told them that was enough. I left angry and in tears.⠀
His pediatrician once wrote the words “wheelchair-bound child” on a referral. I left baffled and in tears.⠀
I was new to parenting, and I did not speak up. I didn’t know I was allowed to.
I didn’t even know it had a name: medical ableism.⠀
That sick, anxious feeling I get weeks before my son’s medical appointments is a result of the injury caused by medical ableism. It’s systemic, it is profound, and it is disempowering.
It has no place in our healing facilities, yet disabled individuals and their primary caregivers face this insensitivity and discrimination daily. ⠀
It’s time the medical system wakes up because this too needs a serious overhaul, starting with mindset training in the professionals who work directly with patients and their loved ones.⠀