Performance of Motherhood: Disability, Surveillance, and The Fight for Home
It was the day my son was supposed to be discharged from the hospital, and the doctor stood at the foot of the bed. He was kind and thorough, and he acknowledged that my son was happy, well-nourished, and clearly loved. Then came the question he said he was “required” to ask:
“Have you considered institutionalizing him? There are facilities that handle 24/7 care and they can take very good care of your boy.”
At that moment, I felt like my breath was taken from me. As a totally blind woman living with Mitochondrial Disease, I am no stranger to being seen as incapable. Sadly, I’m used to being doubted. But when you are a disabled mother to a physically disabled child with significant support needs, the world does more than underestimate you. You live under the constant microscope of surveillance.
While the public is usually told that institutions are necessary for keeping disabled people safe, my experience shows they are frequently a convenience for a society that hasn’t truly committed to supporting community living. We have a very long way to go.
The doctor’s question was just the tip of the iceberg. For me to remain my son’s primary caregiver in the eyes of the system, I had to perform motherhood for a social worker and a hospital physical therapist, and all of this was just because I’m blind.
I moved with the muscle memory of a thousand midnight shifts that I have spent managing oxygen, carrying him to the bathroom, controlling pain, checking his pulse, and interpreting the subtle shifts in his breathing that only a mother knows. My son played his part perfectly. All I had to do was whisper “You know what to do, son.” And we both jumped into motion. My son cooperated with a quiet “disability wisdom” because he knew that our family’s unity depended on this specific performance being worthy of the highest Oscar.
The staff was impressed. They said my son was clearly in capable hands, and they now know us by name at that hospital, as we have gone there several times since. However, that day still haunts me.
I recently asked my son about that day, and he said, “I couldn’t believe that you had to prove that you could care for me. It felt like all those strangers were studying us under a microscope and were just waiting for us to make one small mistake or for me to look scared. I was so angry, but I was determined to play the part I needed to during our performance so that they couldn’t win and take you away from me. It also makes me wonder what other disabled parents go through, and I often wonder what I’d go through if I became a dad.”
The current political rhetoric surrounding cuts to Medicaid and Medicare suggests that people like my son are too expensive or too complex to live at home when, in reality, it is more cost-effective to provide in-home support. But nobody seems to really care about this. So long as disabled people are out of sight and our access and care needs can remain invisible, many believe it is best to just lock us up. This narrative fuels the pipeline to institutionalization. Disabled lives are seen as burdens to be managed rather than people to be included in day-to-day life.
Closing the buildings that warehouse disabled people is only half the battle to achieving a world without institutions. We must also close the “surveillance gap” and trust disabled parents to exercise their God-given right to raise their children. Society must also prioritize funding the community supports, such as home nursing and accessible housing, that make institutionalization unnecessary.
My son is a young man whose best quality of life is found in the messy, beautiful reality of our living room. We are doing everything right. However, we shouldn’t have to “perform” to prove we belong together.
Reina Grosvalet is a freelance content writer, business owner, and full-time caregiver to her adult son. Drawing from her day-to-day lived experience within her family, she writes about caregiving, disability culture, and advocating for accessible systems.
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