By Jennifer Allen
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For us, it began with a baby in a small clinic room at Children’s Hospital of Philadelphia. For most, it begins with an OBGYN discussing termination.
For us, it ended in a Scandinavian style home on a hill in Budapest. For you, I hope it ends with this article.
The idea that a disabled life is a lesser life is a lie that has somehow been woven into the fabric of truth across cultures, religions, and political parties. The cruelest among us look at the disabled and wonder why they were allowed to live. The kindest among us look on with pity, and look for ways to help. Neither of these responses are based on reality.
Over 72% of pregnancies with a spina bifida diagnosis (my son’s condition) end in termination. Depending on the country, that percentage jumps to 98% for a diagnosis like Down Syndrome. If those numbers don’t make you feel a little queasy, I can only assume you’ve never met someone with one of these diagnoses. Google will tell you that these numbers vary because of values and belief systems, but there’s no avoiding the lack of value for disabled life across all borders.
The Start: The Roots of Ableism
Ableism—the belief that disabled lives are inherently less valuable—has deep historical roots, shaped by philosophy, science, economics, and cultural narratives. No one ever came out and told me that an able life is a better life, but I “learned” this as I grew up by seeing the way the disabled were kept separated, more than just physically. The “R” word was still a thing in the 80’s (and in some areas it still is!), and I remember that motion of biting your ear while hitting your chest to insult someone – acting like having an intellectual disability to insult someone’s lack of intelligence.
1. The Ancient “Burden” Narrative
Many ancient civilizations equated physical ability with worth. Sparta is the most infamous example, where weak or disabled infants were supposedly left to die. In some places, this idea is not yet historic. The idea that a disabled person is inherently a burden—not a full participant in society—was ingrained early.
2. Religious Interpretations
Many religious traditions historically viewed disability as a form of divine punishment, bad karma, or a test of faith. This created a double-edged sword: either the disabled person was seen as cursed or as an object of charity rather than an autonomous individual with equal worth. We saw this belief system very much alive and well in Serbia, where society still avoids people with disabilities to distance themselves from the curse.
3. The Rise of Science: Eugenics and the “Perfect” Human
The 19th and early 20th centuries saw the rise of eugenics—a movement designed to “improve” the human race by eliminating those deemed weak, unfit, or genetically inferior. This wasn’t just fringe thinking; it influenced policies worldwide. Science is finally giving us the ability to create a perfect race – but our roots in ableism leave the disabled out of that future. People may disregard the Nazi elimination of the disabled, since most of us agree that their perspective of value was degenerate. But even in progressive societies, this ideology has lingered. Blue eyes over brown is no more absurd than two full arms over a limb difference.
4. Capitalism and Productivity = Worth
As societies industrialized, worth became tied to productivity. If someone couldn’t work a factory job, they were seen as an economic drain. The irony in this is that as we limit education and career opportunities for the disabled, we continue the cycle of people with disabilities being less able to work and put back into the community.
5. Diversity as the Unwanted Spice of Life
Though disability continues to be seen through a medical lens as something to be “fixed” or “overcome,” disability is a normal part of human diversity, not a defect. We cannot choose which snowflake is the right snowflake design – they weren’t all meant to be the same. The mindset needs to shift to structural change, creating spaces that are designed with all in mind, instead of on fixing the person who differs from the majority. No one is offering PT to penguins to help with their wobbly gait, or second guessing a snake’s ability to survive independently because he has no limbs at all. Diversity is a normal part of life – only in the human race does science create a distinction in value.
The Journey
These narratives about disabled lives—burden, punishment, inferiority, economic drain—have been stitched into society for centuries. So when an OBGYN casually discusses termination for a disabled baby, it’s not just medical advice; it’s the weight of history speaking. It’s generations of unexamined bias. It’s what seems to make sense… if you’re missing a true picture of diversity and reality.
Though any personal journey to overcome ableism roots is lifelong, I’m grateful that the most significant progress in our journey happened quickly and early on. Because we got the child before the diagnosis, there was no struggle over whether he had inherent value. Every mom knows her baby is priceless – before he can do a blessed thing.
Even as our doctor talked about limitations and a low quality of life, I felt like she was speaking that over me as much as over my son. It seemed that my quality of life had just plummeted because of having a child who would never walk independently and who would have lifelong medical needs. The weight of the prognosis left me feeling trapped, like I would never be able to get out of the house, to work, to travel, to live, or to do anything other than be a caregiver for my son, ever again. In that moment, we’re thinking less about what makes a person a person as we worry about what may make a life a life.
Personal connection helped to kickstart my journey. My good friend’s father is paralyzed from the waist down. We never talked that much about it, but when I received my son’s diagnosis she jumped in with a real picture of the other side: of a loving, thriving father who continues to work and provide while competing internationally in adaptive sports. It didn’t seem like his quality of life was so bad. It certainly didn’t impact who he was as a person.
As I started to figure out how to get out of the house, where we could go, and what we could do, I found out other people were already doing it. It was in that time frame that we stumbled across Cory Lee – the full time wheelchair user who had just made it to his seventh continent. In fact, in addition to having gone everywhere, it looked like he also did just about everything. Well, that wasn’t the picture the doctor had painted for me at all!
I upped my expectations and we began to travel. We started as simple and predictable as we could, with a trip to Disney. They have a reputation for accessibility and inclusion. We had a fabulous trip. It was the confidence boost I needed to start venturing out.
In the summer of 2021, we spent just over a month traveling Europe. My son was only five, but he was independently using his wheelchair. Accessibility was a nightmare, but people were helpful. More importantly, we found solutions. With each barrier we overcame, it became clearer: the problem wasn’t my son’s existence—it was a world that hadn’t been built with him in mind.
We took the train, we went to the beach, we visited the castle, we played in the hot springs, and we ate in the fanciest restaurant in the world. After that fancy breakfast, and an afternoon at a church in a cave, we stopped by a corner grocer and rolled up the hill to our cute little Scandinavian style home in Budapest for the week. It was on that short stroll that I finally felt our limitlessness. We were doing all of the things I never thought we would. We were living… and I must say the quality of life was good.
I don’t think you need a month in Europe to understand that a disabled life isn’t less, but it was certainly a poignant reminder. My son’s vibrant personality would add just as much to our family if we stayed home. We do things differently, but different is not less. The reality is, a fulfilling life isn’t defined by whether you walk, roll, or anything in between. It’s defined by love and connection. We may roll instead of walking, but our wheels have taken us around the world.
The Finish Line: Breaking the Rules and Changing the Narrative
I wish I could go back to that clinic room in Philadelphia—not to change my son, but to change the conversation. I would tell that doctor what I know now: A disabled life is not a lesser life. It’s not a burden or a mistake. It is full, beautiful, and limitless when given the chance to thrive.
The reality is, the barriers that exist aren’t because of disability itself—they’re because of the perceptions and structures society has built around what makes a life ‘worthy.’ We don’t prioritize inclusive spaces because we don’t value the people who need them.
We don’t have to accept those rules. We can break them. We can rewrite them.
- Hard doesn’t mean not worth it.
- Purpose does not come from productivity.
- Disability is not a curse.
- Independence will never trump community.
- Diversity is a beautiful part of what the world was meant to be.
- Different is not less.
When we stop seeing disabled life as lesser, we don’t just change the future for disabled people—we change the future for all of us. A world where everyone is valued is a better world for everyone.
So break the rules. Break the bias. And live.