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Tuesday, July 31, 2012

More Thoughts on "Disability"

A fellow parent recently brought to my attention a 2003 article from the New York Times Magazine, "Unspeakable Conversations," written by Harriet McBryde Johnson. She was an attorney and disability rights activist with a neuromuscular disease who passed away in 2008. In this article she refutes the argument that parents should have the right to terminate the life of a newborn born with extreme disabilities. While most cases of achondroplasia and hypochondroplasia are not extreme (or even slight) disabilities, the availability of pre-natal testing suggests that parents who find out they are pregnant with a baby with a skeletal dysplasia might chose to terminate the pregnancy for fear of having a child who is different or may have health complications. Regarding a person's quality of life, this quote from McBryde Johnson struck me as especially reassuring.

"Are we 'worse off'? I don't think so. Not in any meaningful sense. There are too many variables. For those of us with congenital conditions, disability shapes all we are. Those disabled later in life adapt. We take constraints that no one would choose and build rich and satisfying lives within them. We enjoy pleasures other people enjoy, and pleasures peculiarly our own. We have something the world needs." (The emphasis is mine)

The family of Fundación Magar gave us a copy of the book, Hacia un nuevo horizonte, distributed by Fundación ALPE. You can download a .pdf copy from their main page. On one of the first pages, I found an interesting sentence, although I do not agree with the use of the word "disability" to describe achondroplasia: “There’s still a lot of work to do so that a disability doesn’t become a dramatic element for families when it shows up in one of their members…” (My awkward translation, sorry). What a novel, interesting idea that parents would consider their child's difference as much a variation of normal as the color of their skin, hair, or eyes. I think most AH parents of children with achon or hypo think that way after varying periods of time, but to hear the diagnosis without an initial feeling of shock probably happens to very few of us. Only when we perhaps adjust a previous image held of the child, learn more about something we never had to know before, talk to others, and get to know our child and his/her personality does the anxiety lessen, if not disappear altogether.

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