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?

Friday, April 01, 2016

How the AWP Disability Caucus Came to Town

On the urging of my husband, Jim, I decided to write this “essay” on disability, AWP, and the disability caucus. There have been rumors and misinformation flying left and right about disability, the caucus, and accessibility at AWP. There have been many posts and articles criticizing the caucus. There have been just as many articles and posts about the treatment of disabled writers at AWP from people who are very mad, yet refused to help with the caucus. There have also been things published that are factually incorrect.

I want to be clear. This article isn’t about shaming people; hence, no names will be referred to other than in positives ways and no links will be put up. It isn’t about putting down the choices of others, or the way others have chosen to deal with the issues of AWP and the world. This essay is absolutely not about trying to trump the many, many people who have come before me nor to belittle their work. Nor is this essay about my ego.

This essay is about the story of what happened, and the work that me and six or seven others did. If only to congratulate and remind myself. No need to join or even congratulate us, but I would like people to read before they continue to criticize, spread rumors, and protest.

If you want to skip the blather- scroll down to the “timeline.”

Before I continue. A bit about me. I am passionate activist and poet. I live in NYC with my husband, one son, and four animals. I have been an “outsider” poet all my life. My father is a ‘famous’ critic, so I grew up with literature, but my entry into the poetry world has been slow. I was writing for 10 years before my first book, and twenty before any recognition.

I am the author of three books of poetry, co-editor of Beauty is a Verb, and independent scholar/biographer of the poet Larry Eigner. I have no institutional backing. I do not have an academic job. I am able to support my work through SSDI and my husband’s teaching salary – neither of which are large. I was a NYC high school teacher for 4 years, but unable to deal with the prejudice, so I left. I adjunct and enjoy it. But, due to the fact that I have cerebral palsy and a speech impediment, I’ve found navigating the New York job market nearly impossible. In short, I equate myself to Sylvia Plath. I am a writer/housewife. All the work I have done with AWP has been solely funded my own household and initiative.

Here is my story:

Last year, I was invited to do a disability panel for Poetry magazine by my friend Don Share. I do not like AWP and have to fund my own trips, so I didn’t really want to do it. However, I have a good friend from Winona and desperately wanted to experience Minneapolis, so I packed up my 10 year old son and off we went.

The morning of the panel, my cell phone rang. I got the call that one of my best friends had died of a brain tumor. She moved to Russian previously and we had lost touch. Needless to say, this was all not fun… a lot happened next… but I will skip ahead.

Jeffrey and I were in the book fair, and we met two wonderful disabled writers:  Leslye Orr and Katie. They said to me, why doesn’t AWP have a disability caucus? I said, “What is a caucus?” Also, after the panel, a wonderful writer named Kelly Davio approached me. She told me that she knew someone on the AWP staff. I believe this was Christian Tersi. She had asked the person to come I and watch the end of the panel. This person was interested.

I went home and emailed my “true partner in crime,” Sheila Black, and said “What is a caucus?” She didn’t really know either, but we decided that if other minorities had one… hell, even elementary school teachers had one, we needed one too. We turned to our friend ‘Facebook” for help.

Meanwhile, our third, Michael Northen, was way ahead of the game. Early on, he began working on the Disability Consortium Table and a reading for AWP. He had a successful fundraiser to make this happen.

Here is the next chain of events:

I cannot find the original post, but just days after AWP 2015, I got to work, with Sheila’s urging. I put a post on Facebook to build a caucus.

On April 14, 2015 I posted a Facebook message asking for 30 regular attendees to sign a petition for a disability caucus.

On April 15, I had collected about 20 signatures; the first on my list was Lynn Melnick of Vida. There were a number of trans writers on the list and the list was primarily able-bodied people.

Later that day, Meg Day approached me via email and expressed interest in helping form the caucus.

By April 27, 2015 Meg, Sheila, and I had exchanged 30 emails. Meg had drafted the caucus proposal to AWP. This added up (already) to numerous unpaid hours.
On April 15, 2015 I started a Facebook group for writers with disabilities.

By May, we three, with Meg doing most of the paperwork, had submitted the caucus to AWP. So, the recent article that the caucus was put together AFTER the outcry simply isn’t true.

Then came the scandals. I am not going to dwell on those because, frankly, most people were following those versus the work we did for the caucus.

A primary complaint was that there were no disability specific panels accepted to AWP 2016, with the exception of the caucus.

Later, turned out this wasn’t completely true. The truth was more complex. There were actually a few panels based on trauma and illness and other panels with disabled writers on them.

Also, I was hesitant about signing the petition because it insisted retroactively that a disability panel be accepted, and personally, I did not agree with that. But, I am thrilled the petition got out there and helped.

On  August 1st, I reached out to Christian Teresi via facebook.  (Also, messaged David Fenza who did not reply). This started a 12 page correspondence about accessibility at AWP. I pressed hard on issues of getting a disabled activist on the Board, in the subcommittees, and accessibility issues. Meanwhile, Sandra Beasley, who lives in DC, and Sarah Katz, who works for AWP, were also working on these issues.

On August 3, 2015, Christian approached Sheila, Meg, and I regarding all the negative media attention that AWP had received. This (again) began a 20 plus email exchange. I posed question based on what I had read of other’s experiences, my own experience at Bronycon. and Meg and Sheila’s suggestions. Some of these were:

1. Is there a possibility of getting a person at registration to help people with disabilities so that we don't have to wait in line?

2. Is there a possibility that the person people connect with via email can ask as a liaison for folks if hotels give them trouble?

3. Is there a possibility that the language on the website can reflect the MLA language?

4. Is there a possibility that AWP can apologize for past inaccessibility issues?

5, is there a possibility that it be a REQUIREMENT that panelist bring print outs to panels? I don't even think that this should be in accessibility, but in general rules...

6. Could AWP consider using CART?

Because it is email, I cannot post the answers without CT permission. If he gives it, I will.

This led to a 2-hour telephone conference with Christian and others at AWP. Hopefully, I’m getting my point across. This was a lot of work and time. All along the way, we asked people to post complains, suggestions, and be involved. Many complained. Few helped.

But now we had a caucus and we needed to get organized. We quickly learned that Meg won a grant and was leaving for Australia. Over the next few months, Meg put countless hours into making bylaws, building a website, forming twitter, and Facebook pages and so on. Meanwhile, Sandra Beasley, Sarah Katz, Jillian Weisse, Michael Northen, Kelly Davio, and Ellen McGrath Smith all were working steadily on preparing for the caucus. Jim Ferris agreed to be nominated for president. I kept reaching out to people to address specific issues.

Through countless emails and hours, as a group, we were able to

1.     Build a caucus with a website, bylaws, a Board and social media.
2.     Get AWP to put more benches in the convention.
3.      Put a disability activist on the 2017 selection sub-committee.
4.      Meet numerous writers through social media.
5.     Make AWP very much aware of the issues of disabled writers.
6.     And agree to only list accessible sites on the off-site schedule (although this didn’t pan out as we intended).

Now, that I write this. I feel we haven’t accomplished as much and as vast as we set out to do. Although, just having the attention of the Directors, forming a caucus where there was none, and getting an activist on the subcommittee was a lot. Next year, it will be an even bigger splash.

What I mainly would like to point out is that I do not deserve to be put down or attacked. I, and many others, did hours and hours of work. We asked many to help. Many declined. We still went ahead. The work surely isn’t done. These are just baby steps.