I’m Disabled And People Have No Problem Telling Me This One Shocking Thing

"Throughout my life, this message was repeated continually to me by medical professionals, educators, friends and family."
"I am proud to be disabled today," the author writes.
Photo Courtesy Of Sarah Pfohl
"I am proud to be disabled today," the author writes.

I was in my early adolescence the first time someone told me that I would “never want to be a parent.” I didn’t understand what they meant at first. And then, all at once, I knew what they were telling me about their beliefs in my body, its capacities and its cultural value.

I’ve been disabled for my entire life. I manage multiple, incurable, very rare genetic conditions. For years, I was sure that I’d made the decision not to have children. I no longer know if this is true.

Throughout my life, this message was repeated continually to me by medical professionals, educators, friends and family, teaching me over time that — because of my disabilities — I shouldn’t want children. Even when I was a child myself, people felt comfortable and confident telling me that I would be an unfit parent.

The pivotal moment came when, as an 11-year-old, I was sitting in the car with a member of my immediate family who said, matter-of-factly and with kindness: “You would never want to have children anyway. It wouldn’t be right.”

I responded in the affirmative without really understanding what had just happened. I can’t remember what precipitated this conversation, but I had probably just spontaneously fractured yet another bone — a common occurrence for kids with osteogenesis imperfecta, my primary diagnosis.

In eighth grade health class, we did an egg-related parenting exercise, and a peer casually remarked that it wasn’t important for me. “You can’t have kids anyway, because of your problem,” they said.

Ever the excellent student, I remain, at 40, childless.

But of course, the story is more complicated.

Whenever I thought about having kids, I focused on the fact that I wouldn’t be able to pick up a child and carry them. In my mind, that action became the main measure of whether I could parent, even though parenting involves much more than that one physical act.

I was deeply concerned about being unable to comfort a child — but again, the act of comforting can be done in a variety of ways that don’t necessarily involve physically picking anyone up. I zeroed in on those aspects of the role that I would never be physically capable of performing to make it easier for me to accept my “choice” not to be a parent.

This narrative protected me from going against the norm, from having to fight my doctors and health insurance company, from imagining myself as a parent.

Five years ago, I visited a geneticist. And though I had not requested family planning information, he told me — with pleasure and excitement — that when I “decided” to have children, he “could ensure they wouldn’t be like me.” That is, they would not carry my osteogenesis imperfecta diagnosis.

I immediately thought, “What’s so bad about who I am?”

Dominant culture will tell you that disabled people lead harder lives. Systemically, this isn’t wrong. In the U.S., the cost of medical care is high ― health care spending per capita was $12,914 in 2021. Separation by ability (into general and special education groups) remains a common, unquestioned practice throughout U.S. schools. Disabled people are commonly pushed out of education and employment. In 2022, the employment rate for nondisabled people ages 16-64 was 74.4%, while it was only 34.8% for disabled people.

But everyone struggles at times, disabled or not. Many think of disabled individuals as needy and burdensome, but who doesn’t have needs? Most people will experience circumstances — a broken arm, a peanut allergy, a terminal cancer diagnosis — that could count as disabled at some (or many) points in their life. Bodies continue to change in unpredictable, surprising ways, especially amid the COVID-19 pandemic, a mass-disabling event.

And we should not assume that life in a diagnosed body will be bad. I, like most disabled people, could be described in a multitude of ways — someone who graduated from Harvard, is hard of hearing, loves dogs, keeps herniating disks, breaks a lot of bones, is a tenure-track professor, almost always feels tired and/or in pain.

This cocktail of facts doesn’t add up easily into OK or not OK, well or unwell, healthy or unhealthy. Plenty of disabled people lead rich, fulfilling lives.

We’ve likely all heard some version of the following: An expectant parent is asked about the sex of their forthcoming baby, and they respond with something like, “We don’t care, as long as it’s healthy.”

The author is pictured as a child with her father.
Photo Courtesy Of Sarah Pfohl
The author is pictured as a child with her father.

Each time I hear this, it shocks me. I wonder: What does “healthy,” a notoriously slippery concept, mean in this context? And what will the parent do if the child doesn’t meet their needs? No one wants a child to suffer, but this commonly expressed sentiment portrays an “unhealthy” child as fundamentally unsatisfactory.

Globally, the World Health Organization estimates that 1 in 6 people (16%) experience significant disability. In the U.S., the Centers for Disease Control and Prevention states that up to 1 in 4 (27%) of adults have some kind of disability. Since disability isn’t going anywhere, it is imperative to understand that disabled people are human too and that the world is a better place with disabled people in it.

According to a 2022 report from the National Women’s Law Center, 31 U.S. states and Washington, D.C., still maintain laws that give judicial authorities, loved ones and guardians the power to sterilise disabled people without their consent. At their core, the offhand comments that shaped my relationship to parenthood reflect similar values.

Disabled people are fully fit to be good parents. More than that, however, they absolutely deserve the right to choose whether they want to pursue those roles.

I am proud to be disabled today. But all those people who encouraged me not to have kids made it easy to believe that I was unwanted, that I don’t belong here. I now mourn for the children I might have had if the world hadn’t taught me that it was unethical to conceive of myself as a parent.

I should have had the opportunity to choose, rather than having that door closed for me. My children never had a chance, but perhaps — if we learn to normalise, expect and embrace disability as part of the human experience — someone else’s will.

Sarah Pfohl is a dis/abled, chronically ill assistant professor of photography at the University of Indianapolis and a fellow with The OpEd Project’s Public Voices Fellowship.

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