Monday, August 29, 2011
My friend,disability rights activist colleague, and personal assistance services user Carly, just recently underwent one of the rituals of parenthood, having her oldest daughter move out. The daughter in question is 21. Her name is Lena.
What makes Lena different from other 21-year-olds is that she has multiple disabilities. In addition to having Cri du chat syndrome- a rare syndrome that results in feeding problems because of difficulty swallowing and sucking, low birth weight and poor growth, severe cognitive, speech, and motor delays ,behavioral problems such as hyperactivity, aggression, tantrums, and repetitive movements , and unusual facial features. Additionally, she's nonverbal and has a feeding tube.
Most people don't think anyone like Lena can live independently. But Carly did and earlier this month she moved her daughter into the guest house. There, Lena has her own staff and pretty much runs her own schedule.
Likes every other adolescent, however, Lena was none too pleased when mom showed up to check on her unannounced one morning. According to Carly's Facebook status, Lena signed the following: "no no no", "stop stop", "go go go".
As a friend on Facebook said, "Hello, Ms. Independent!" As bittersweet as that moment must have been for Carly when I dream about parenthood I can only hope that, especially if my child is deemed as unlikely live independently at Lena was, I someday share the same moment. If I do, it will be the greatest triumph in my life as one who works for justice.