Sunday, June 19, 2016


On a Thursday evening, I left therapy and got on the nearest train. As a person with cerebral palsy, it takes me a good deal of effort, and sometimes pain, to walk from one place to the other. New York City is brutal for someone who has difficulty walking. The subways generally do not have elevators, the expanses from one train to the other are long, and people get frustrated with someone who is slow. I need to ascend the stairs one at a time due to a bad knee.

I have explored getting “access-a-ride,” the service for people with disabilities. However, in order to use this service, I would need to call two days ahead of time and a have a two-hour window for pick up. Not only is the service impractical, it’s disrespectful. The system implies that a person who needs the ride does not have a job or any other timely commitment, It’s a reflection of how American society views people with disabilities in general.

I am not that person, the fictional person without responsibilities. I am disabled, yes. I have a speech impediment and move slowly and with difficulty. I am also a busy mother. I teach an adjunct class. I am four years into writing a biography. I am currently working with a lawyer on putting together a non-profit for poets with disabilities. I write essays. I am currently writing my fourth book of poetry. I am on my condo board. And, this is just the tip of the so-called iceberg. In other words, I’m a typical New Yorker. Distracted, busy, sometimes in my own head.

On Thursday, which could be any given Thursday, here was what was inside my head; I left therapy at 5, fifteen minutes late. I had to be at a condo board meeting at 6:30. I planned to get to my neighborhood and meet my son for dinner and go to the meeting in the expanse of an hour and half. In the process, I bent over my phone to send an email at 14th street and didn’t notice that I had gotten on the wrong train. When I got on the train, I started doing the crossword puzzle. At 59th, I remarked to myself that I had forgotten that stop was on this route. In the 70s, I realized the train was absolutely not going to Queens. I got off at the Natural History Museum. Slogged down another long flight of stairs and started the journey in reverse.

When I got to Queens to transfer to the train to Brooklyn, it was 6:15. I realized that I would not be able to meet my son for dinner before the condo meeting. There is a long hallway between trains. As I walked up the stairs, I was worrying about my son’s late dinner, arrangements I had to make for a summer trip, and the condo meeting.

I’m a very open person, so sometimes I stop and give directions to people or say hello. I watched this very clean-cut, young ordinary man walk ahead of me. Then, he circled back and came up to me. I stopped because I thought he needed directions of something. He told me “I don’t know if it’s ok to say this.” I thought he was going to ask me out on a date. It was very awkward. I said, “What is it?” I really wanted him to hurry and he was hesitating. He told me, ‘I want to know if I could pray for you to heal your legs.” He pointed to my legs. I was completely taken aback. I fumbled. I told him, “I am happy the way I am.” He told me, “It’s not about you being happy. It’s about curing your legs.” It seemed as if he wanted to do a “healing” right then and there. He told me, “It will only take a minute. You can say ‘no’ if you want.” I said, “No” very firmly, and he walked off. And I walked off.

But that wasn’t quite the end of it. I wanted to be nice because he was obviously very awkward and well-intended.

I can imagine many, many abled-bodied people reading this won’t understand what the fuss is all about. Even though if one isn’t the kind of religious person that believes God can magically “cure” a person through prayer, they will probably attests, “Hey, this guy meant well.” But what he said was not okay. It is not okay to stop a busy stranger and tell them that there is something wrong with them and you can fix it. It feels like a violation. It feels like and assault. And it is.  I would like you to put yourself in my shoes for a moment. How would you feel if someone approached you and offered to have God help you? The problem is that it doesn’t have the same effect as helping a person who is actually in trouble. I have had many people offer to take my arm when going down the stairs. Many times I accept, sometimes I don’t, but this has a different feeling.

The feeling I got was one of worthlessness. I felt like this person (abled) thought he had a power over me (disabled). I felt deeply unseen. Would this person understand that I was a mother? A teacher? That I owned a condo? Would he understand that I have a lot of agency and part of the agency is to shake off this exchange and go on with my day? Does he care?


Godsil said...

I profoundly appreciate your "agency!" Your "voice!" Howl from the rooftops and elevate our humanity. I lost a buddy a couple of years back who was the co-founder of "Disability Warriors." Conversations and experiences with Tom are among my life's high moments. He and I came up with the thought that all of God's children at this stage of our human venture are along certain dimensions not so able...disabled...challenged in various capacities more than most. My disabilities are in the inner, emotional realm. In my "performance," poetry and conversation, I sometime must bite my tongue to not flaunt my "kaleidoscope of affective disorders." Google James Godsil images if you would like to swap stories with some of my many selves. And thank you for your life as art experiments!

Peter said...

So true, the NYT piece. I'm AB, and a healthcare professional. Many years ago I had to spend 24 hours using a wheelchair as part of my training. I vividly recall that I became invisible to women who would have otherwise been checking me out the minute I sat in the chair. (You're not the only one who was hot at 26!) I also recall that my instructor and the class thought I was a little pervy, describing my experience, which says a lot about attitudes toward sexualty and disability.

Thanks for the article.