I was in my early teens when someone first told me I “never want to be a mom.” At first I didn’t understand what they meant. And then I suddenly knew what they were telling me about their belief in my body, its abilities and its cultural value.
I’ve been disabled all my life. I care for several, incurable, very rare genetic diseases. For years I was certain that I had made the decision not to have children. I don’t know if that’s true.
This message has been repeated to me time and again throughout my life by medical professionals, educators, friends and family, and over time it has taught me that – because of my disabilities – I should not children want. Even when I was a kid myself, people felt comfortable and confident when they told me I would be an unfit parent.
The defining moment came when, as an 11-year-old, I was in the car with a member of my immediate family who said matter-of-factly and kindly, “You would never want to have children anyway.” It wouldn’t be right.”
I answered “Yes” without really understanding what had just happened. I can’t remember what sparked this conversation, but I had probably just broken another bone spontaneously—a common occurrence in children with broken bones Osteogenesis imperfectamy main diagnosis.
In eighth grade health class we did an egg education exercise, and a classmate casually remarked that it wasn’t important to me. “You can’t have children anyway because of your problem,” they said.
Although I’ve always been an excellent student, at 40 I’m still childless.
But of course the story is more complicated.
Whenever I thought about having children, I always thought that I couldn’t pick up and carry a child. For me, that act became the primary measure of whether I could raise children, even though there is much more to parenting than just this one physical act.
I was deeply concerned about not being able to comfort a child – but again, comforting can be done in a variety of ways without the need to physically lift someone. I have focused on the aspects of the role that I would never be able to physically play to make it easier for me to accept my “choice” not to be a parent.
This narrative protected me from breaking the norm, having to deal with my doctors and health insurance, and pretending to be a parent.
Five years ago I visited a geneticist. And although I hadn’t requested any information about family planning, he told me, with joy and excitement, that when I “decided” to have children, he “was able to make sure they weren’t like me.” That means they would not carry my diagnosis of osteogenesis imperfecta.
I immediately thought “What’s so bad about who I am?”
The dominant culture will tell you that disabled people live harder lives. Systematically this is not wrong. Medical costs are high in the US ― health expenditure per capita was $12,914 in 2021. Ability grouping (into general education and special education groups) remains a common and undisputed practice in US schools. disabled people are often repressed of education and employment. In 2022 the employment rate For able-bodied people aged 16 to 64 the proportion was 74.4%, while for disabled people it was only 34.8%.
But everyone has problems sometimes, disabled or not. Many think that disabled people are needy and burdensome, but who doesn’t have needs? Most people experience circumstances—a broken arm, a peanut allergy, a terminal cancer diagnosis—that can qualify as a disability at some (or many) points in their lives. Bodies continue to change in unpredictable and surprising ways, especially amid the COVID-19 pandemic, a mass paralysis event.
And we shouldn’t assume that living in a diagnosed body will be bad. Like most disabled people, I could be described in many ways: someone who graduated from Harvard, is hard of hearing, loves dogs, has constant herniated discs, breaks many bones, is a tenured professor and almost always feels tired and/or in pain .
This cocktail of facts is not so easy to summarize as “OK” or “not OK”, “good” or “unwell”, “healthy” or “unhealthy”. Many disabled people lead rich and fulfilling lives.
We’ve probably all heard the following version: An expectant parent is asked the gender of their unborn baby and replies with something like, “We don’t care as long as it’s healthy.”
Photo courtesy of Sarah Pfohl
Every time I hear this, it shocks me. I’m wondering: what does “healthy,” a notoriously tricky term, mean in this context? And what will the parents do if the child does not meet their needs? No one wants a child to suffer, but this common sentiment portrays an “unhealthy” child as fundamentally unsatisfactory.
Worldwide the World Health Organization estimates that every sixth person (16%) has a significant disability. In the US, the Centers for Disease Control and Prevention conditions that up to 1 in 4 (27%) adults have some type of disability. Since disability doesn’t lead anywhere, it’s important to understand that disabled people are people and that the world is a better place with disabled people.
Accordingly a report for 2022 from the National Women’s Law Center, 31 US states and Washington, DC, quiet Maintain laws that give judicial authorities, family members and guardians the power to sterilize disabled people without their consent. At their core, the casual comments that have shaped my relationship with parenting reflect similar values.
People with disabilities are ideally suited to be good parents. Beyond that, however, they absolutely deserve the right to choose whether to take on these roles.
I am proud to be disabled today. But All the people encouraging me not to have children made it easy to believe that I was unwanted and didn’t belong here. I now mourn the children I could have had if the world hadn’t taught me that it is unethical to think of myself as a parent.
I should have had the opportunity to choose instead of having that door closed to me. My kids never had a chance, but maybe – if we learn Normalize, expect and accept disability as part of the human experience – the will of another.
Sarah Pfohl is a disabled, chronically ill Assistant Professor of Photography at the University of Indianapolis and a grantee of the OpEd Project’s Public Voices Fellowship.
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