THE BLOG
09/04/2014 03:23 pm ET Updated Nov 04, 2014

Who Is to Say What Is Wrong and Right

On a Saturday morning in June, my wife and I sat with my brother and his wife in a set of bleachers beside an outdoor pool, cheering on my two nieces as they raced in a neighborhood swim meet. At some point, my sister-in-law noticed a young boy amongst the chairs and picnic tables that sat farther back from the pool. The boy, like me, was a dwarf. Later, my wife and I tracked down the family of the boy to introduce ourselves. We learned that the boy was adopted. Adoption is not uncommon in the dwarfism community. I know average stature parents who adopted a child with dwarfism, and I know dwarf couples who chose to adopt a child of short stature. Adoption provides an option for prospective parents and an option for individuals who, for one reason or another, are unable to raise a dwarf child.

An online article from August reinforced the importance of adoption programs. In the paper's online "Voices" section, the Chicago Sun-Times published a story about parents who filed a wrongful birth suit because a health care provider "failed to uncover their son's diagnosis of dwarfism before he was born." At the time the parents filed suit, the child was two and had built up "extraordinary expenses" to treat issues related to the child's dwarfism. It's possible, despite the term "wrongful birth," that the parents would have continued the pregnancy even if they had known the fetus was a dwarf. It is possible the parents love the child, and want the child, but suing the health care provider presented the only viable option to deal with the financial stress. I am no expert but overwhelming health care expenses don't surprise me. Until the Affordable Care Act guaranteed health coverage, a dwarf could be denied insurance based upon pre-existing conditions. But no matter the circumstances of the family, the term "wrongful birth" is painful to endure. The wrongful birth lawsuit sends a message, whether accurate or not, that the parents would rather the child not have been born. The complaint sends a message that the birth of a dwarf child is a mistake. I've failed to meet anyone, dwarf or average stature, whose life is a mistake.

Like the child in the Sun-Times story, many dwarfs face challenges. There are more than 200 types of dwarfism and many are connected to specific orthopedic and neurological issues. Many dwarfs spend time in the hospital as children, and as they age may face a new set of physical challenges related to dwarfism. Though physical challenges exist, the most significant obstacles that stand between a dwarf's life and a typical life are social barriers, attitudes and prejudice against people with physical differences. Messages sent by the wrongful birth lawsuit add another layer of social bias against dwarfism.

Despite the recent lawsuit, this bias has been on the decline. Through internet, social media and cable television, people who have never met a dwarf have exposure to people of short stature that are lawyers, teachers, doctors, and actors. In the case of performers, people are exposed to dwarfs who are valued for their talent more so than their physical stature. We see fewer dwarfs in popular culture whose stature is the butt of jokes, and more dwarfs portrayed as typical people, which is important, because the lives of people of short stature are fairly typical. They spend their days like everybody else, trying to be good sons and daughters, accomplished students, productive teachers, valuable employees, loyal bosses, and dedicated parents. Exposure to the typical slowly erodes bias and prejudice against dwarfism.

While the lives of dwarfs may often be typical, dwarfism is not, occurring at a rate of one in every 10,000 births. Because it is rare, the diagnosis can be a surprise to new parents not expecting a dwarf child. But resources are available. New parents can find others who have gone through similar experiences. They can find information about what to expect, both socially and medically, and they can find news about dwarfs who are living full and productive lives. Still, some people may not be ready for parenthood. With that in mind, I am thankful for families such as the one beside the pool at the swim meet.

For now, I hope the parents from the "Voices" story find the supports they need. I hope health care evolves so that all parents will have adequate resources for their children, no matter if the children are disabled or not. I hope the two year old boy and all children grow up to thrive in a world unburdened by the social bias of "wrongful birth."