During my early adolescence, I was told by someone that I would never want to be a parent. At first, I didn’t understand their reasoning, but eventually, I realized they were expressing their beliefs about my disabled body and its perceived limitations.
I have been living with multiple, incurable, and rare genetic conditions my entire life. For a long time, I was certain that I had made the decision to not have children. However, as time went on, I began questioning whether this was truly what I wanted.
Throughout my life, medical professionals, educators, friends, and family continuously reinforced the idea that because of my disabilities, I should not desire to have children. Even when I was a child myself, people felt comfortable telling me that I would be an unfit parent. The turning point came when I was only 11 years old, sitting in a car with a family member who matter-of-factly stated that I would never want to have children and that it wouldn’t be right. I agreed without fully understanding the weight of their words. This pattern of discouragement continued as I participated in a parenting exercise in eighth grade, where a peer commented that it wasn’t important for me to have kids because of my “problem.”
As an excellent student, I have remained childless at the age of 40. But the story is more complex than that. Whenever I considered having children, my focus was always on my physical limitations, particularly the inability to pick up and carry a child. In my mind, that one physical act became the measure of my ability to be a parent, even though parenthood encompasses so much more.
I was deeply worried about being unable to comfort a child physically, but I failed to recognize that there are numerous ways to provide comfort that don’t involve physically lifting someone. I fixated on these aspects of parenting that I believed I couldn’t fulfill, using them as justification for accepting my “choice” to not be a parent. This narrative shielded me from going against societal norms, from fighting against my doctors and health insurance, and from envisioning myself as a parent.
Five years ago, during a visit to a geneticist, he unexpectedly mentioned that if I ever decided to have children, he could ensure they wouldn’t inherit my osteogenesis imperfecta diagnosis. This statement made me question what was so wrong about who I am.
Society often portrays disabled individuals as leading difficult lives, and there is validity to that claim. In the United States, the cost of medical care is exorbitant, and disabled people are frequently segregated into separate education and employment systems. However, everyone faces struggles at some point, regardless of disability. Being disabled doesn’t mean being helpless or burdensome. Many individuals, disabled or not, lead fulfilling lives and contribute positively to society.
We often hear expectant parents express the desire for a “healthy” child. But what does “healthy” truly mean, and what happens if the child doesn’t meet those expectations? No one wants their child to suffer, but labeling an “unhealthy” child as fundamentally unsatisfactory perpetuates a harmful mindset.
According to estimates from the World Health Organization, approximately 1 in 6 people globally experience significant disability. In the United States, the Centers for Disease Control and Prevention states that up to 1 in 4 adults have some form of disability. Disability is a part of the human experience that isn’t going away, and it’s crucial to recognize the humanity and worth of disabled individuals.
Unfortunately, 31 U.S. states and Washington, D.C. still have laws that allow for the sterilization of disabled people without their consent. These laws, along with the offhand comments that influenced my perspective on parenthood, reflect a disregard for the rights and autonomy of disabled individuals.
Disabled people are fully capable of being excellent parents. Moreover, they have the right to choose whether they want to pursue parenthood. I take pride in my disability today, but I can’t help but mourn the children I could have had if society hadn’t taught me that it was morally wrong for me to envision myself as a parent.
I should have had the opportunity to make that choice for myself instead of having it taken away from me. My children never had a chance, but perhaps, if we normalize disability and embrace it as a part of the human experience, someone else’s children will have a brighter future.
Sarah Pfohl, a dis/abled and chronically ill assistant professor of photography at the University of Indianapolis and a fellow with The OpEd Project’s Public Voices Fellowship, shares her journey and highlights the importance of recognizing disabled individuals as valuable members of society.
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