Tuesday, September 23, 2014

Interview #2, Starrleen Simmons

         Starrleen Simmons has shiny bright eyes behind thick glasses, and a snappy haircut that she insists is a mess.  Her voice punctuates the air with enthusiasm, laughter and protest.  She was born with cerebral palsy, and got through high school in spite of her learning disabilities. I met her in 2012, when she volunteered to “play with the kids” at Space No. 1.  One or two days a week during the spring of 2012, she greeted families, played, cleaned up, closed up. She was one of our most valuable workers.
         One day, my daughter Miranda and I were talking with her about dreams, and Starrleen said that her dream was to have a baby. Walking is difficult for Starrleen, as are picking up toys from the floor, and taking off a coat and putting it on a hanger.  I wondered how she would manage the immensely physical parts of parenthood.  Her biggest challenge, however, was what half the women in New York seemed to face: finding a man. Nothing is impossible these days, but still, it is hard to make a baby without one.  Maybe even beyond Starrleen.
         Time passed. Schedules changed.  Extreme Kids grew.  We didn’t see Starrleen so much. Then in the summer of 2013, I noticed a post on FB. Starrleen was pregnant. In the fall, there were pictures from the hospital. There was Starrleen, in the arms of a handsome bearded man, holding a baby to her breast.
         Miranda asked me: what’s Starrleen going to do now she’s gotten her dream?
         I drove over to Williamsburg to find out.  Starrleen lives in a first-floor apartment in a 1970’s behemoth by the J/M tracks and a sprawling Food Bazaar Supermarket. The apartment had been big enough when it was just for her.  Now there is Maurice (36), Kasuan (10 months), and a full load of baby gear.  A recent flood in the building led to the displacement of much of the contents of the apartment, further adding to the clutter. But there is room on the couch to settle down and hold a chubby, curly haired boy on your lap and admire his big, wide smile.  There is that familiar, tired, homey haze of new parenthood, of interrupted sleep, and of life revolving around the diapering, napping and feeding of a child who stops your heart when you look at him a certain way.
         I asked Maurice if he ever thought he’d be a father, and he shook his head.  He didn’t know if he could do it.  Turns out he can. Much of our conversation revolved around how impossible it is to keep babies in their cribs at night, for they are so insistent on snuggling up with their parents.   Because both Starrleen and Maurice have disabilities, home health aides come to help during the day. But Starrleen and Maurice are always in charge. I liked Georgia, the woman who was working there the day that I visited. When she went out on break, Starrleen informed me that not all of the health aides were as good.  “Some of them want to raise the baby themselves. I have to tell them, ‘he’s my baby.  I’m the mother.’”  Her exasperation reminded me of professional mothers I’ve met, struggling with the dynamics of raising a child with the help of a babysitter or nanny.  It’s a complicated situation.  Then again what about parenthood isn't complicated?

How would you define disability?
Disability is sometimes a struggle, but you work through it.

What drives you nuts about disability?
The most frustrating thing about being a disabled parent is the looks I get when I’m walking with my son or pushing him. They’re like, “why is this disabled woman pushing a stroller?” They come asking, “are you babysitting?” No, it’s my kid. It’s his kid. We’re both disabled. When I was pregnant, people stared at me like, “oh my god, who let her get pregnant?” Somebody actually said that.  I’m a grown woman. I’m 32. I'm allowed to get pregnant!

Recent Wonder
Kasuan walking, standing up, and trying to balance.

Current Project
Keeping him alive and one day having another one, saving enough to have another one, because, Lord Jesus, people say “oh, it’s going to cost money,” and you’re like, I got it, then you realize you only got 700 a month and you go, huh?

Friday, September 12, 2014

Interview #1: Brenda Shaughnessy

The lines of disability are always shifting; the whole business is amorphous.  Felix was born into this world and here he will remain. I came into it through him, and after some adjustment feel very much at home here. It is a world inhabited by people from every pocket of culture: rich, poor, black, white, Sikh, Evangelical, atheist, gay, straight, illiterate, non verbal,  Guggenheimy (I’ve met a surprising number of Guggenheim fellows through Extreme Kids).  They may be disabled themselves, or they may care for someone who is, or they may work with the disabled.  They may be all of the above. But they---we--are all, on some level governed by disability.  
This may result in a deep, abiding understanding and appreciation of the variety of human life.  Or it may not. When Felix is happy, I enjoy being here.  When he is unhappy, when pain and rage shoot through him,  I curse his state. Yet it is the world of disability that most understands my sorrow and props me up.
To flesh out this world, explore the communion and understanding that often comes through disability, and expand my knowledge of disability, I would like to regularly conduct interviews with the remarkable people that I get to meet through Felix and Extreme Kids.  I started this project in a very pleasurable manner by asking the poet Brenda Shaughnessy out to dinner. 
Brenda’s latest book, Our Andromeda, is an electrifying and candid exploration of motherhood, and her relationship with Cal, her firstborn son, who was born with cerebral palsy.  Brenda’s husband, the poet Craig Teicher, explored this territory from the father’s point of view in To Keep Love Blurry.  Someday, I will interview him, too.  The experience of leafing through the pages of both of their books together, folding my fingers over them and allowing their images of parenthood and brokenness, fury, exhaustion and desire to sink in and meld with my own was one of my great reading experiences of 2012.

What's your connection to disability?

How would you define disability?
That’s hard. It is not one thing. It encompasses a huge range of things. Bodily systems. Emotions. Invisible disabilities. The more I’ve seen my own son as disabled, the more I’ve seen how normal disability is. 

We all have our disabilities, stuff that we can’t do, stuff that drives us nuts. What’s something that you can’t do?  
Here’s one: being able to sing without embarrassment. Embarrassment in general. Think how normal it is not to be able to dance. Your embarrassment stops you from getting up in a room full of people and moving your body. We say how sad it is that kids in wheelchairs can’t dance (though sometimes they can), when we able-bodied people give up our chances to dance all the time.

Recent wonder:
Three years ago, the Rusk Center at NYU said Cal did not have the trunk strength to use a walker and wouldn’t give us one.  Just last week, Cal started using a gait trainer. His therapist sent me these movies of him laughing maniacally and trying to concentrate super hard, bumping into walls, and walking down the halls of his school.

Current project:
Singing lessons! I am sick to death of being afraid of the sound of my own voice. Cal loves it when I sing, but I have to sing as well as I can or he gets mad.  He can detect the difference between trying your hardest and BS.

Brenda credits her singing lessons with helping her break through a two year writing block.  New poems are emerging, words pouring out.  I find it fitting that a directive of Cal’s would lead her there.

For more about Brenda: www.brendashaughnessy.com