Evil

by

When I was just ten days old, my birth mother chose to place me for adoption due to being informed about my condition, specifically achondroplasia, which is a type of dwarfism. A brisk medical professional delivered a document detailing that children like myself were typically viewed as “malevolent” and “unintelligent,” and historically found employment in circuses.

At the time of my birth, my mother was a young, unmarried parent who was dealing with hormonal imbalances due to childbirth. The news that I would likely be ridiculed, accompanied by images depicting how I might appear in the future, was overwhelming for her. She lacked support and felt terrified.

After three decades, it’s comforting to believe our society has advanced significantly towards inclusivity. My five Paralympic gold medals and dance performance adorned with sequins on Strictly Come Dancing serve as proof of our progress.

However, regarding societal views on disabilities during pregnancy, have there been significant advancements? The reactions of parents upon receiving a prenatal diagnosis of disability offer insights into our broader culture. This matter is delicate and has unfortunately remained undiscussed for far too long.

Titled “Ellie Simmonds: To Have Children or Not?” implies that this is not just an ordinary query but a deeply intimate one. At thirty years old, I’ve begun contemplating my future.

During the creation of my movie, I discovered that if I were to conceive with a partner who also has dwarfism, there would be a one in four likelihood that our child might inherit two sets of genes related to skeletal dysplasias – meaning that they could potentially have these conditions.

Unfortunately, it’s a nearly incomprehensible circumstance we’re dealing with. The doctors frequently recommend termination due to the fact that if these babies are born, they typically don’t make it past the initial stages of life due to severe respiratory and cardiovascular issues stemming from stunted bone growth. No parent should have to endure such heartache.

If I undergo genetic testing, it ensures that my children won’t inherit the dwarfism gene from me. However, if more people opted for this testing, no babies with dwarfism would be born to couples who both have dwarfism.

Right now, I’m savoring the freedom and adventures that retirement from competitive swimming in 2021 has brought me. However, eventually, having a baby may become a consideration for me.

In my film, I engage in heartfelt conversations with numerous admirable parents, each of whom courageously shares their experiences of learning that their yet-to-be-born child may have a disability. It’s possible for individuals to harbor unconscious biases about disability without realizing it until they receive such a diagnosis concerning their unborn child.

Even now, issues related to language persist – for instance, a parent I conversed with was informed that it was simply “bad fortune” upon learning their child had dwarfism during a 28-week ultrasound examination.

Several people shared that they harbored apprehensions regarding their child’s future. One parent was deeply anxious that his yet-to-be-born child, who was diagnosed with Down’s syndrome, might face bullying at school due to their genetic makeup. However, when he held his beautiful newborn in his arms, his fears subsided.

It’s quite normal to be afraid, given the uncertainty about the child’s health. However, our fears might diminish if we lived in a more welcoming and understanding community. While we’ve certainly progressed, there’s still room for improvement.

Approximately one quarter of the United Kingdom’s residents identify as having a disability, yet they continue to face disparities in areas such as education, jobs, housing, and overall health and happiness.

Through the loving adoption of my five siblings and me, my parents fostered an overwhelming sense of self-worth and pride about my identity and condition as a person with dwarfism. Alongside my fellow siblings, many of whom also live with various disabilities, this unique aspect of my life has become the very essence that makes it so extraordinary, even in the face of challenges.

As a film critic, I’ve come to appreciate the profound impact movies can have, especially when they challenge our perceptions and broaden our understanding of life. One such movie, which left an indelible mark on me, is a poignant portrayal of the lives of individuals living with disabilities. What struck me most was not just the struggles they faced, but the incredible joy and wonder that filled their lives.

For many expectant parents, this aspect remains hidden, as medical professionals (who tirelessly work to ensure our health) often provide information without the context of the richness a life with disabilities can bring. This is where the visibility of these stories on screen and in society becomes crucial – it allows us to see beyond the challenges and embrace the beauty that lies within each unique life.

As a film critic looking back on my own life’s journey, I can’t stress enough the importance of providing additional resources for parents whose children are diagnosed with disabilities, whether before or after birth. Thirty years ago, I was that child who required support, and I wish there had been more available to my birth mother at the time. It’s crucial that we create a world where no parent feels alone in navigating such challenges.

Read More

2025-05-20 02:34