On the Basis of Care
Plus: Kentucky legislation would streamline requests for cameras in I/DD facilities; Study shows CP levels correlated to level of family impact; Virginia mom credited with paid family care law
It’s been a lazy holiday week and I’ve had time to watch movies.
The first movie I saw was “Nightbitch” about the struggles of a stay-at-home mom, played by Amy Adams. As a stay-at-home mom myself, (or “homemaker” as I have to put on some forms, making me feel even more anachronistic), I enjoyed the movie, finding it cathartic to see a fantastical representation of my life on the screen.
The second movie I watched was the 2018 biopic “On the Basis of Sex” about Supreme Court Justice Ruth Bader Ginsberg’s early career. The case at the heart of the movie was the appeal of a tax law that allowed only women or widowers a tax deduction to hire a nurse to care for a disabled relative. Perhaps because the appellant was a man claiming gender discrimination, the appeals court rule in his favor. They reasoned that the equal protection guaranteed by the 14th amendment and reinforced by 1964 civil rights legislation would apply to gender as well as race. That legal theory — and victory — was the basis for what would become Bader Ginsberg’s crusade to upend dozens of laws in the United States Code that treated men and women differently.
From my perch, here, more than half a century later, I am stunned at how many of the legal arguments for gender discrimination pivoted around care and who is expected to provide care. In the movie, many of the characters argue that the consequence of allowing these freedoms that we now take for granted would be the effects on children.
“Paint the judges a picture of the America that will exist if they rule the wrong way,” one of the government attorneys advises the other in the movie. “Children running home from school to find... No one’s there. Mommy’s at the office. Or on a factory floor....The other side wants this to be about the Equal Protection Principle. YOU need to show the court that what’s really at stake is the American family.”
My generation grew up under equal protection. It turns out that women can be perfectly competent lawyers and doctors and electricians and soldiers. But it also turns out that when they are able to do these jobs (that our patriarchal society has valued with respect and high salaries), American women don’t want the jobs that have for so long been underpaid and under appreciated in our society — teachers, nurses, daycare providers, caregivers, etc. And as more men and fathers perform those roles, they are lending their voices and experiences to the fight for not just equal protection but equal recognition.
Indeed, with artificial intelligence now threatening many historically male-dominated professions — such as lawyers, doctors, coders and academics — I believe that we are on the cusp of another generational movement: One that starts to value historically female pursuits. After all, AI can’t change a diaper.
The women’s rights movement was an incomplete solution. Equality between the sexes isn’t just about allowing women access to the roles that have been centered in male-dominated fields. It’s also about changing what is valued and respected.
Because what happens when (not if) families need care labor? What happens when care needs are higher than expected? What if the 2-year-old in “Nightbitch” never stops needing that level of care? What happens when the daycares won’t take him because he still needs diapers at 5? Or when the schools are too dangerous for his neurotype? What happens when there are still “homemakers” who still aren’t doing that unpaid job by choice?
As long as there are human beings — new ones, old ones, sick, injured, disabled or mentally ill ones in between — we will need caregivers. There is nothing more human than living in relationship with others. We give and love and care for each other in ways big and small.
Raising children, helping our elders, doing the dishes and laundry and shopping is the fundamental work of the species and will always exist. Oftentimes — as in the case for many in the Medical Motherhood community — there is no choice but to sacrifice everything else to do that work, because there’s no one else to do it and our loved ones deserve it.
Though society is better for breaking down the stereotypes and stigmas of which gender can do what jobs, we are still — ethically and legally — struggling with these core questions:
Who will do our care work? And what does society owe them for it?
Medical Motherhood’s news round up
Snippets of news and opinion from outlets around the world. Click the links for the full story.
• From the Kentucky Lantern: “Kentucky mother wants to expand who can have cameras in residential facilities”
Ann Jeannette Pierce is worried by the unexplained bruises and cuts that periodically pop up on her nonverbal adult daughter.
So, the Owensboro woman is asking the Kentucky legislature to make it possible for her and others like her to have cameras in residential facilities such as the one where her daughter, Caroline, lives.
Pierce’s proposal would essentially fast-track the current process, which involves an application to a human rights review committee, whose members then decide if it’s appropriate to waive privacy protections for that individual.
Opponents worry the legislation could create a series of privacy issues that violate the rights of individuals living with disabilities.
[…]Pierce testified before the Interim Joint Committee on Health Services on Sept. 25 about the legislation Sen. Reggie Thomas, D-Lexington, plans to sponsor in 2025.
During that meeting, several adults with disabilities expressed their concerns about the legislation and its potential to violate privacy.
[…]In the case of individuals who cannot voice their consent, Thomas said, the bill allows guardians to make that call for them.
While there are concerns to work out in the language ahead of the 2025 session, Thomas said, “there’s no downside in protecting disabled children.”[…]
• From the Fredericksburg Free Press (Virginia): “My Top 5 stories of 2024: Joey LoMonaco”
[…]How a Stafford mom helped pass a law that pays caregivers of disabled children
3. Too often, laws are shaped by lobbies and money. It was refreshing to hear how one local resident — Stafford mom Emily Sagle — was able to influence legislation with the power of her experiences as a caregiver for her profoundly autistic son. […]
• From Cureus (journal of medical science based in California): “Psychosocial and Economic Burden on Families of Children With Cerebral Palsy: A Correlation With Locomotor Severity”
Cerebral palsy (CP) is recognized as the most prevalent childhood disability, affecting approximately 2 to 3 children per 1000 live births globally [1,2,3].
[…]The care and management of children with CP rely heavily on a multidisciplinary team approach, involving pediatricians, neurologists, physiotherapists, occupational therapists, and educators [7]. However, the central role in the daily care and rehabilitation of these children is often played by parents and other family members [8]. These caregivers must be actively involved in every stage of the child's treatment, including managing healthcare appointments and physiotherapy sessions and ensuring adherence to treatment protocols. While this involvement is crucial for the child's well-being, it places a significant psychosocial and economic burden on the family [9].
[…]The results of this study [on 160 children between the ages of 2 and 14 in India] demonstrate a clear and significant association between the degree of a child’s motor impairment, as classified by GMFCS, and the psychosocial and economic burden on their families. Higher GMFCS levels were correlated with increased disruption in family routines, greater financial strain, and more severe physical and mental health challenges for caregivers. These findings underscore the importance of tailored support systems for families, addressing both the medical needs of children with CP and the broad range of psychosocial and economic challenges faced by their caregivers. So the different government schemes regarding children with CP must be conveyed to each parent to take the benefit and relieve their stress.[…]
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