I was informed for the first time that I would “never want to be a parent” when I was in my early adolescence. Initially, I didn’t fully understand the meaning behind those words. But eventually, I realized that they were conveying their beliefs about my body, its capabilities, and its worth in society.
Since birth, I have lived with several rare genetic conditions that cannot be cured. For a long time, I was certain that I had made the decision not to have children. However, I am no longer sure if this is still true.
Throughout my life, I continuously received the same message from medical professionals, educators, friends, and family members, suggesting that I shouldn’t desire to have children because of my disabilities. Even as a child, people were comfortable telling me that I would be unfit as a parent.
The turning point came when I was eleven years old, sitting in a car with a family member who casually said, “You would never want to have children anyway. It wouldn’t be right.” I agreed without fully comprehending the significance of that moment. I can’t recall what led to that conversation, but it was probably triggered by another spontaneous bone fracture – a common occurrence for someone with my primary diagnosis, osteogenesis imperfecta. In eighth grade health class, during an exercise related to parenting with eggs, a classmate casually remarked that it wasn’t important for me because of my “problem.”
As an obedient student, I remained childless even at the age of 40. However, the story is more complex than that. Whenever I contemplated having children, my focus would always shift to the physical limitations I would face, such as being unable to lift and carry a child. In my mind, that became the primary criterion for evaluating my ability to be a parent, even though parenting encompasses far more than just that one physical action.
I was deeply anxious about my inability to provide physical comfort to a child. But again, comfort can be offered in various ways that don’t necessarily involve physically lifting someone. I fixated on those aspects of parenting that I wouldn’t be physically capable of fulfilling, using them to justify my “choice” not to become a parent.
This narrative shielded me from going against societal norms, from having to battle against my doctors and health insurance company, and from envisioning myself as a parent.
Five years ago, I had a visit with a geneticist. Although I hadn’t sought out any family planning information, he enthusiastically informed me that when I “decided” to have children, he “could ensure they wouldn’t be like me.” In other words, they wouldn’t inherit my osteogenesis imperfecta diagnosis. My immediate thought was, “What’s wrong with who I am?”
The dominant culture often portrays disabled individuals as leading more difficult lives, and there is some truth to that from a systemic perspective. In the United States, the cost of medical care is exorbitant, with per capita health care spending reaching $12,914 in 2021. Segregation of disabled individuals into general and special education programs remains a prevalent and unquestioned practice in U.S. schools. Disabled people are frequently excluded from educational and employment opportunities. In 2022, the employment rate for nondisabled individuals aged 16-64 was 74.4%, while it was only 34.8% for disabled people.
Yet, everyone faces struggles at various points in their lives, regardless of disability. Many perceive disabled individuals as dependent and burdensome, but who doesn’t have needs? Most individuals will experience circumstances – a broken arm, a peanut allergy, a terminal cancer diagnosis – that could be considered disabling at some point in their lives. Bodies continue to change unpredictably, particularly amid the COVID-19 pandemic, which has been a mass-disabling event. We should not assume that life in a diagnosed body will necessarily be negative. Like most disabled people, I can be described in numerous ways – someone who graduated from Harvard, has hearing loss, adores dogs, suffers from recurring herniated disks, breaks bones frequently, is a tenure-track professor, and consistently feels tired and/or in pain.
This combination of facts doesn’t easily categorize someone as either okay or not okay, healthy or unhealthy. Numerous disabled individuals lead fulfilling and meaningful lives.
We’ve all likely encountered a version of the following scenario: An expectant parent is asked about the sex of their unborn baby, and they respond with, “We don’t care, as long as it’s healthy.” This statement always surprises me. I wonder, what does “healthy,” a concept with varying definitions, mean in this context? And how will the parent react if their child doesn’t meet their expectations? While no one wants a child to suffer, this prevalent sentiment portrays an “unhealthy” child as inherently inadequate.
According to the World Health Organization, an estimated 1 in 6 people (16%) worldwide experiences significant disability. In the United States, the Centers for Disease Control and Prevention states that up to 1 in 4 (27%) adults have some form of disability. Since disability is a permanent fixture in society, it is crucial to recognize that disabled individuals are just as human as anyone else, and the world is a better place with them in it.
A 2022 report by the National Women’s Law Center reveals that 31 U.S. states and Washington, D.C. still maintain laws that grant judicial authorities, loved ones, and guardians the power to sterilize disabled individuals without their consent. At their core, the casual comments that influenced my perception of parenthood reflect similar values.
Disabled people are fully capable of being excellent parents. Furthermore, they unquestionably deserve the right to choose whether they want to pursue such roles. Today, I take pride in being disabled. However, all those individuals who discouraged me from having children made it easy to believe that I was unwanted and did not belong in this world. I now grieve for the children I could have had if the world hadn’t taught me that conceiving of myself as a parent was unethical.
I should have had the opportunity to make that choice instead of having that door closed for me. My children never stood a chance, but perhaps, if we normalize, expect, and embrace disability as an integral part of the human experience, someone else’s children will.