Do parents of kids with disabilities deserve admiration? Pity? Are they courageous? Self-important? Preachy? The public debate on these weighty topics has been raging for the past month over at the New York Times’ Motherlode blog site, and shows no signs of letting up.
It all started when Amy Julia Becker wrote a guest blog about her decision not to undergo prenatal screening or testing for Down syndrome during her third pregnancy. Becker and her husband, who have a 4-year-old daughter with Down syndrome, concluded that they didn’t need the testing because they had no intention of terminating a pregnancy if they found a nonstandard number of chromosomes.
The post triggered a host of reader comments that reflected society’s ambivalence toward people with disabilities. While many of the comments were supportive of Becker’s decision, some were critical and many focused on the perception that a person with a disability poses an unwanted “burden” on the family and the society at large.
Becker followed her initial NYT post with a second one, Is it harder to have a child with Down syndrome? In that post, which also drew a wave of emotional comments, Becker noted that her biggest stress comes not from her daughter’s disability but rather from the ignorant and negative judgments society makes about people who wear the distinctive signs of Down syndrome on their faces. An excerpt:
I have the privilege of being the mother of a child with Down syndrome and, through her, being introduced to a world of people who have taught me more about what it means to be human than my education and productive life skills ever could. Harder times may come, but I cannot imagine a day when I would regret her presence in my life or in our community.
And now for today’s installment on Motherlode: Guest blogger Stacie Lewis, whose 18-month-old daughter May has severe brain damage, says she shouldn’t be considered a hero just because her child has a disability. (Needless to say, emotional comments have begun to flow.) An excerpt from Lewis’ post:
I wonder why people are comfortable with the idea of disabled people and their parents as heroes. I fear it comes from the same place as that other disturbing sentiment, pity.
To this, I add a final thought.
It will come as a shock to some.
I am happy. My life is fulfilling. I worry sometimes, but I also find love and pleasure in my life every day. And, much of that is because of May, not despite her.
There are many people in the world who are alone and unhappy. Pity them.
Readers, what’s your take?