More Thoughts on "Disability"

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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.

Dressing in Spain

A mom fabulously dressed for the playground

I am having such fun people-watching here. People seem to enjoy getting dressed in Spain. Overall, they tend to dress up more than in the States- even when wearing jeans and a T, they somehow seem more pulled-together. Maybe everything is ironed, or a woman’s bag matches her shoes or just that the cut of the pants or shirt are more trendy, almost vanguard. I love watching people of all ages- the beautiful dresses that moms put their girls in to play on the playground, the older women perfectly coifed, the heels everyone somehow is able to wear in spite of the tiled sidewalks and steep, steep hills.

Whenever I arrive, I’m always taken aback or puzzled by some trend- mullets on young guys, pants with a super-baggy inseam and skinny legs on young girls… and yet, by the end of the month I find myself thinking: hmmmmm… could I pull that look off back home? (Almost always the answer is NO, especially as I get older), but it’s fun to check everyone out and enjoy the creativity.

One thing I really like is how babies are not limited to pastel shades of blue and pink. There are lots of options available for both sexes here, to the point that I’m sometimes surprised. The other day I was in the baby section of El Corte Inglés, a very popular department store all over the country, and a woman, holding up an outfit, asked the sales lady if it was for a boy or a girl. It was overalls with puffy legs in a deep pink with a white shirt that had embroidery and ruffles on the neck and wrist. I scoffed to myself; of course it was for a girl, but the sales lady and another woman standing nearby entered in debate. “It’s for a boy.” “No, it could be either.” The three finally decided that yes, the outfit could be for either a baby girl or a boy. It has also happened a few times that people have thought Belalu was a boy, even though she was wearing what would definitely be considered “girl” colors and styles in the US. The reason she had to be a boy? Her ears weren’t pierced.

I love these fun differences of cultural perceptions that remind me what I take to be a given, doesn't have to be. It's all in our perception of reality. It's one of the reasons I love to travel- to expand my views and to keep me open-minded.