The Power of Self-Perception

When my older brother, Dan, was born with Down syndrome in 1977, my parents were thrown into a world they hadn’t anticipated. Resources were scarce, the medical community offered little guidance, and societal attitudes were often exclusionary. But my parents became fierce advocates—not just for Dan but for the broader Down syndrome community. They fought for his inclusion in school, sports, and everyday life, ensuring he had every opportunity to thrive.

In a recent episode of The Death Readiness Podcast, I sat down with my father, Carmen Mastroianni, to talk about Dan’s early years. We discussed my parents’ battles to get others to see Dan’s full humanity, and the unique long-term planning that accompanies raising a child with a disability. I also sat down with Dan to get his perspective, in his own words.

What stood out most to me in our conversations was how much my father and Dan both emphasized the fullness of Dan’s life. My dad approached every challenge as a problem to be solved, ensuring Dan received quality medical care, education, and the ability to participate in his community. Dan, in turn, doesn’t view his life as a struggle. When I asked him how having Down syndrome affected him, he simply said, “it doesn’t really affect me, because I still have a great life.”

Dan’s perspective echoes the findings of a landmark study on self-perception among individuals with Down syndrome. The study, published in The American Journal of Medical Genetics, surveyed 284 people with Down syndrome and found that nearly 99% reported being happy and fulfilled in life. They expressed love for their families, pride in their identities, and confidence in their ability to form friendships and contribute meaningfully to their communities.

This research challenges outdated narratives. Historically, medical professionals and society at large have often framed Down syndrome through a lens of limitation and hardship. As Dan battled severe and complex respiratory issues, doctors even advised my parents to take Dan home and “let him pass.” If my parents had accepted the medical advice, Dan wouldn’t have had the chance to prove them all wrong.

Instead, with the right support and advocacy, Dan has grown into an independent, socially engaged, and contented adult. He thrived in high school, participated as the manager on multiple sports teams, and formed deep, long-lasting friendships. He competed in Special Olympics, worked, and eventually moved into a group home where he experiences a sense of belonging.

Like any population, the voices of individuals with Down syndrome must be centered in conversations about their lives. Participants in the study urged new and expectant parents to embrace their child’s future with hope, not fear. They further encouraged healthcare professionals to value them, emphasizing they share similar hopes and dreams as people without disabilities. 

Dan’s story—and the stories of so many others—prove that happiness, fulfillment, and meaningful engagement are not limited by a diagnosis. They are nurtured through love, advocacy, and thoughtful planning for the boundless road ahead.

If you’re interested in learning more about Dan’s story, listen to Episode 7 of The Death Readiness Podcast, below: