Monday, June 20, 2016

Me Before You

I have been following many of the comments regarding the popularity of “Me Before You.” Defenders of the Time’s Best Seller make some good arguments. 

The primary argument is that the book is fiction and only tells the story of one man. People, including its author, Jojo Moyes, argue that the story is absolutely not supportive of eugenics or assisted suicide. The story means to be a great, golden age love story. Remember “An Affair to Remember?” 

Moyes also argues that she doesn’t think its right for anyone to make a judgment on the story until they have read the book or seen the movie (i.e given her more money). But, fair enough. I decided to check it out for myself.

Here is a quote from a friend to the girlfriend speaking about the main character, Will, who is “wheelchair bound” as the flap on the book tells us.

“’There have been times when I’ve stayed over and he’s woken up screaming because in his dreams he’s still walking and skiing and doing stuff and just for those few minutes, when his defenses are down, and it’s all a bit raw, he literally can’t bear the thought of doing it again. He can’t bear it. I’ve sat there with him and there is nothing I can say to the guy, nothing that is  going to make it any better. He’s been dealt the shittest hand of cards you can imagine. And you know what? I looked at him last night and I thought about his life and what it’s likely to become.’”

There are a number of things that are wrong with this picture.

11.     Moyes is using disability as a metaphor. This isn’t a portrayal of an actual disabled person. The disability is acting as a literally device for plot development of a love story. Disabled people are exhausted from this cliché that is so pervasive. Remember “An Affair to Remember?” They are supposed to meet on the Empire State Building to declare their love. But, the female character doesn’t show up because she’s been hit by a car and paralyzed from the waist down. Plot development. "Affair" was actually campy and strange. The boyfriend said "I'll love you all the same." Flawed for sure. But at least he didn't help her off herself and run to the bank!

22. When parsed together views of what is compassionate euthanasia --and what is not-- are hypocritical and nonsensical. I understand Will’s passion for skiing and traisping around, however, what about other conditions that hamper these abilities? Aging? Poverty? Having children? Being in a depression? In what situations should a person be encouraged to acclimate and in what situations should killing yourself be lauded. This just exposes the view of disability. People in their 80s are not told to kill themselves because they can’t ski anymore. BTW, what happened to Will's prowess as a business man? Is that gone too? Someone call FDR!

3.3  Everyone is in pain, yet euthanasia is lauded only for disabled people. Again, this is about outside perception.

44.    This is just dumb. Really? A guy who has bags of money and a cute girl in love with him has no reason to live? By the way, has this guy ever tried, like, reading a book? Most people don’t spend their lives doing extreme sports! But again, there is the fantasy. The fantasy of physical perfection given and taken away. Instead of exploring what is possible, and how a life can change and deepen, it is “brave” for Will to kill himself. Note: At the end of the book the girl is having coffee and headed off to the “parfummerie” and the whole of Paris beyond. Sounds physically taxing, doesn’t it?

55.    Is it ok for Moyes to co-opt a person from a community that she doesn’t belong to nor have any experience with? This has become a no-no in terms of race, gender and sexuality, but in disability, it remains the accepted norm.

66. There are no books published by or about sexy capable disabled people. They are supressed. The culture doesn't want them. The culture wants someone to look down at. They don't want to be threatened by all these disabled people going around. How could someone with a disability possibly be happy? Moyes is ready to help... all the way to the bank.

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?