Jesse Ridgway, a YouTube “influencer” I’d never heard of, is suddenly in the news because he & his wife made the difficult & sad decision to terminate Ashley Ridgway’s pregnancy after tests revealed the fetus had Trimsomy 21, better known as Down syndrome. The New York Times article I read about the Ridgways’ public acknowledgment of the choice they made probably wouldn’t have been written had the Ridgways not been public figures with a large audience, with whom they were honest about their choice to end a pregnancy, and had they not faced a tremendous backlash of harsh criticism about their choice. Republican Speaker of the House Mike Johnson called their decision “evil.”

Please note that Johnson has supported one bill after another to eliminate supports needed by families caring for disabled & “special needs” loved ones of all ages at every stage of life, from infancy, when every family needs extra support in the form of family leave, healthcare & affordable child care, to old age, when many families need (affordable) help with dementia & disability care. He has also worked tirelessly to eliminate the choice of whether to continue a pregnancy for any reason, including a genetic disorder that means the child will need fulltime care from cradle to grave & never live independently, as have most members of the Republican Party. Republicans like Mike Johnson care about the lives of people with serious disabilities that are expensive to treat & often mean that-in families that can’t afford to hire caregivers-one family member won’t be able to work outside the home-only in utero. As soon as the child is born, the parents-sometimes parent-are on their own to navigate a daunting maze that includes healthcare insurance companies that view disabled children as financial liabilities & seek to avoid paying for any care an army of pink-collar bureaucrats can label “not medically necessary,” underfunded school systems that have an obligation to serve intellectually & physically disabled children but not enough funding to serve them well, & people who are happy to criticize the decision the Ridgways made but really don’t want to cope with these children by accommodating them in public spaces & providing the services & support parents need to care for them without going bankrupt.

I have a better idea than most of the challenges these families face because my parents dealt with these challenges. My brother, Philip, born in 1960, was profoundly disabled, intellectually & physically. He had an extra chromosome, but not Down syndrome. During the first 10 years of his life, his diagnosis changed several times, often when he outlived the typical lifespan of the previous diagnosis. Cornelia de Lang syndrome & Kleinfelter’s syndrome were two of the diagnoses, but-my parents were told-he also had other chromosomal abnormalities. In 1961, Philip was labeled “profoundly retarded.” “Retarded” is not an accurate word, but neither is “developmentally delayed.” “Delayed” implies that progress is possible. Philip did finally walk at age 3. By the time he was 5, he could move remarkably fast despite his odd gait, as he walked pitched forward on the balls of his feet. But he never learned to talk & during the 10 years he lived with us, he wasn’t toilet trained. In the 60s people used cloth diapers. My older brother & I grew up with a diaper pail in our bathroom. One aspect of Philip’s condition was chronic diarrhea, probably due to the fact that he ate a puréed diet heavy on oatmeal & puréed fruit. No one loves changing the diapers of a wriggling, sometimes uncooperative infant. My mother changed the diapers of a larger, much stronger child who really didn’t want to stop running around & who couldn’t understand requests to “be still” 2 or 3 times a day for years. My brother was like a large, mobile, permanent 1-year-old.

Another challenge was feeding Philip. He would learn to feed himself & forget but needed supervision or he’d upend his oatmeal, pudding, puréed meat and vegetables. By the end of every meal, he, the high chair and the floor were covered with food unless it was spoonfed to him. If he didn’t like what he was fed, he’d spit it out. My mother fed him 3 times a day.

I’m not sure when the self-abusive tantrums began, but as Philip grew older, they required 2 people to control. Philip was always small & slight. Thanks to the severe scoliosis he developed in adolescence, he never topped 4’6”. But he displayed strength that seemed superhuman during tantrums, banging his head against walls, floors and hitting himself repeatedly. My parents had to remove all hard furniture from his room & replace them with foam rubber. We used a baby gate to confine him there during tantrums. His head was hard, & both of my parents sustained black eyes & other bruises trying to stop Philip from hurting himself. The treatment for these tantrums prescribed by doctors in the small towns where we lived-my father was an exploration geologist in the mining industry, and we lived in or near mining towns in Georgia and Tennessee while I was growing up—was knock-out drops. I have painful memories of hearing my parents struggling to administer the drops when Philip had a tantrum in the middle of the night.

For the 10 years Philip lived at home with us, his care consumed much of my mother’s life. She and my father worked very hard to ensure my older brother & I had a normal childhood. But that’s hard to do when the needs of the profoundly handicapped sibling are 24/7 & the time demands so great.

In 1970, my older brother graduated from high school. That summer, my father worked with my uncle, who was an agricultural adviser in the U.S. Foreign Service & knew Tennessee’s senators, to secure my brother a place in a new institution, Arlington, near Memphis, where my father had grown up and my grandmother still lived. The stated reason was that my mother and I weren’t strong enough to deal with the tantrums, but my father later told me, “It was either institutionalize Philip, or wait two years and institutionalize your mother for depression and exhaustion.”

My family moved to Denver that summer, and my older brother entered the University of Colorado in Boulder. I went from being the middle child in a family where a lot of time & effort focused on caring for Philip to being an only child. My mother struggled to adjust to a life where she actually had time for herself & to Denver traffic. My father had taught her to drive in 1956 when I was an infant, which both laughingly claimed was the closest they ever came to divorce, & she was always a nervous driver. Denver was the first big city she was forced to navigate & learning to deal with city traffic herself & teaching me to drive stretched the limits of her nerves. She had also just spent 10 mostly thankless years providing loving care for Philip, who couldn’t return or display affection; he displayed many behaviors now labeled autistic, including repetitive noises, spinning & flapping, self-abuse & raging tantrums, and he never met your eyes or showed he knew when you were speaking to him. My father traveled 3 weeks out of 4 in his job exploring for copper with Amoco Minerals & she was left to deal with her grief & sudden wealth of free time alone.

As an adult, I realize the burden of caring for Philip and the tremendous guilt she felt after institutionalizing him broke my mother, even though I am equally certain placing him in the institution at least bought her 15 happy years of the 30 she had remaining. In the late 1970s, she suffered a serious depressive episode. In the early 1980s, she spent 3 weeks in a psychiatric institution, where a psychiatrist brought her back by changing her medication. She would take antipsychotic medication for the rest of her life. Only after she moved here and, in the early 1990s, began helping me take care of my 3-year-old daughter, Kelsey, and my new baby, Allie, born in 1992, did she come out the other end of her depression.

The point of this overlong essay is: Caring for a profoundly handicapped child can come at a high cost to families, and particularly mothers. I’m glad the Ridgways had the opportunity to opt out of the life my parents lived for themselves and their child. During both of my pregnancies, I was tested—although genetic counseling had concluded Phillip was “an anomaly” and that any member of the population had the same risk of such an outcome. I had decided I would terminate the pregnancy if I learned my child would be intellectually disabled due to a chromosomal abnormality. I did not want the very hard life my parents had endured throughout the 32 years of Philip’s life—the grinding care burden & the guilt of shifting that burden to institutional caregivers. If Mike Johnson considers that “evil,” I can live with that. What I can’t live with is politicians like Mike Johnson making that decision for expectant parents. And the hypocrisy of their position is in clear view in that they don’t support any financial or physical investments to support these parents.

I think I know why. A Sunday school teacher in their Methodist church in Rome, GA, in the mid 1960s, cruelly singled my parents out, informing the entire class that they had clearly committed an egregious sin to be punished with a child like Phillip. I think Mike Johnson and other supposedly “pro-life” “Christians” in Congress believe that people “blessed” with severely handicapped children somehow “deserved” that. And Johnson & his cruelty caucus want to make sure that punishment lasts at least two lifetimes—the lifetime of the mother and of her handicapped child.