Monday, August 29, 2011

Big Girl

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.

Sunday, August 28, 2011

In Response to Can't Even Go to the Park by Stacy Trasancos

Dear Mrs. Trasancos,

I read your blog. The post Can't Even go to the Park alarmed me in ways I can't express, although I will try to. I, like you, must deal with people I don't agree with from time to time. One of my very best friend's in the world is a rather outspoken atheist. As she lives in my house and works for me, I have asked her not to discuss the subject with me.

You see, I am not an atheist, but a proud member of the United Church of Christ. As she lives in my house I think it is only fair that I can lay down rules like this. After all, no one is requiring her to live in my house or to be in my employ.

If I was to come to your house, I wouldn't wear any openly bisexual apparel or bring up the subject unless you started telling me I was evil or something along those lines. It's your house. I go by your rules. If, however, we are out in a public venue, I have as much right to express my identity and opinions as you do yours. This doesn't give me the right to come bother you or you to come bother me.

If one of your children decided to come talk to me, which little children often do because they find my power wheelchair fascinating. I would smile, answer any questions they had, and probably ask where mommy was.

If they happened to ask why I was holding hands with a woman or why I had a rainbow sticker on my wheelchair I would tell them that it's because I think its okay to love whomever you love. This does not make me a horrible person nor am I trying to infect your children with what you call, "the secular agenda." In reality, I'm pretty far from secular myself.

If you're truly paranoid about the idea of running into a person who you assume, rightly or wrongly, might be engaging in same-sex sexuality in some public area, I suggest you move. You're right about one thing, you are outnumbered here.