My 4-year-old son has a unique combination of five health conditions, including being born without an anus. His condition makes him incredibly rare, with very few people in the world sharing his exact combination. One day, he turned to me and expressed his wish for me to have an ostomy bag, just like him. I could sense his feelings of loneliness and isolation in that simple statement.
Determined not to let him feel alone, I went into our bathroom, piled with medical supplies, and grabbed an ostomy bag. This small bag, similar in size to a sandwich baggie, collects his waste through a hole in his abdomen. I taped it to my stomach, inspired by the act of friends and family shaving their heads in solidarity with those losing their hair due to chemotherapy. If wearing an ostomy bag could make him feel less alone, I was willing to do it every day.
When he saw the bag on me, his excitement was palpable. He asked eagerly, “Wait, you have an ostomy bag too? Will you poop there too?” I didn’t want to deceive him or downplay the significance of the surgery he had undergone to create his stoma. So I explained that I had just taped mine on, showing him the difference. I reassured him that I was willing to do this for his sake, to make him feel less alone. However, he responded with disappointment and declined my offer to tape one on.
In that moment, I realized the foolishness of my idea. While my husband and I do everything we can to care for him and advocate for him, our bodies are fundamentally different from his. We can never truly understand the challenges he faces. It dawned on me that many children with disabilities must feel this way, alone and noticeably different every day. They may be the only ones with disabilities in their families, neighborhoods, or schools.
According to the Centers for Disease Control and Prevention, up to 27% of U.S. adults have a disability. However, the Census Bureau reports that only 4.3% of children have a disability. Cognitive disabilities are the most common among children, which my son does not have. Furthermore, representation of disabilities in the media and popular culture is severely lacking. A 2022 study found that popular programming for children ages 2 to 11 did not feature any lead characters with disabilities in the previous year. Even when disabilities are depicted, they are often used to elicit pity, humor, or to portray characters as old or evil.
Toys and books for children also rarely depict or incorporate disabilities, although there is a growing movement to change this. It is crucial to have more inclusive content and toys that reflect the diversity of our world, so that children with disabilities can see themselves and others can better understand, appreciate, and accept the range of bodies and experiences around them.
While I cannot magically make people with the same disabilities as my son appear in his world, I can work harder to make him feel seen and understood. I refuse to ignore or hide his disabilities, as they are an integral part of who he is, and he should never be ashamed of them. In consultation with a therapist, we decided to address his surgeries, medical experiences, and physical differences openly. I suggested doing a presentation in his preschool class to help his friends better understand him, and he excitedly agreed. His teachers were supportive of the idea.
One day, I stayed after drop-off to join his class for circle time. We discussed how bodies can be different, highlighting various characteristics such as eye color, skin color, hair texture, and height. Then, I explained to the class how my son’s body is different when it comes to using the bathroom. Using a special doll and the medical supplies he uses, we showed them where an ostomy bag goes and how it functions. My son eagerly passed around catheters and ostomy bags for his friends to examine. The children listened attentively, nodding along when I emphasized the diversity of bodies. They eagerly shared their own experiences at the doctor’s office, establishing a relatable connection.
This tactic of openly discussing differences is something I witnessed my parents do for my sister, who had multiple disabilities. We always made a point to explain her condition to those around us, helping them understand and accept her. It worked wonders, as people quickly embraced and loved her once they grasped what made her unique.
After the presentation, I asked my son how he felt about sharing his body with his friends. He beamed and said, “I loved doing it! I’m happy that my friends got to see how I work.” His joy affirmed the importance of openness and acceptance.
As we celebrate Disability Pride Month in July, let us remember the significance of talking openly about our differences. It is our responsibility as adults to ensure that children with disabilities feel seen, accepted, and loved. I, for one, will continue working tirelessly to help my son feel understood and supported because his disabilities are a part of him that should be celebrated, not hidden away.
Holly Kearl is an author, a community manager at the Aspen Institute, and the founder of Stop Street Harassment.
Denial of responsibility! VigourTimes is an automatic aggregator of Global media. In each content, the hyperlink to the primary source is specified. All trademarks belong to their rightful owners, and all materials to their authors. For any complaint, please reach us at – [email protected]. We will take necessary action within 24 hours.
