New York Public Library Does Disability: We Have a Problem

The New York Public Library is a New York landmark. It is a truly special place. Visitors can rub shoulders with tourists, writers (famous and unknown), researchers, and characters only New York City can produce. NYPL is also an architectural gem and, as with most landmark buildings, I get to enter through a side door. Yes, those monolithic steps and two lions guarding the front doors look great but do not do me much good.

The NYPL is commemorating the 20th Anniversary of the ADA this July. The library is holding a series of events and I highly recommend people attend. I am impressed with the NYPL programs as they have gotten outstanding scholars, politicians, and writers to participate. Yesterday's panel discussion, "The ADA: On the Personal Level" was an absolute delight. I was able to hear two of my favorite writers on disability read from their contributions to Voices From the Edge--here I refer to Leonard Kriegel and Stephen Kuusisto. Also on the panel was Achim Nowak and the moderator was Ruth O'Brien who edited the aforementioned text. All four people did a great job. I entered the library yesterday with some trepidation. I was going to be miserable if I heard people talk about how great the ADA was and what amazing progress has been made. I trusted the writers who appeared though and I was not disappointed. Kriegel was exactly as expected--a hard ass New Yorker with an edge. Kriegal is a manly man whose presence and writing oozes testosterone. His reading from "Beloved Enemy: A Cripple in the Crippled City" reminded me why I love New York. He made me realize yet again that the toughest New Yorkers are we cripples that live and thrive in the city. Kuusisto was poetic and funny--again, exactly what I expected. He wrote a short essay for this occasion and took the opportunity to blast higher education for its ongoing failure to accommodate students with a disability. Like Kriegal, a first rate hard ass, Kuusisto made a point to mention that when he flew into Newark Airport a taxi driver refused to drive him and his guide dog Nira--so much for the progress of the ADA. He also humorously told the audience about the byzantine world of 311 that lead him on a telephone journey to nowhere when he tried to lodge a complaint. Also impressive were Achim Nowak and Ruth O"Brien. Nowak read from his essay "Disclosure" about his experience letting others know he was HIV positive. He reminded me what a huge social and personal difference there is between those with a visible as opposed to invisible disability. As for O'Brien she edited Voices From the Edge and no doubt gets disability, Not only do all the essays fit well together but I admired the first sentence of her Preface that put readers on notice they were in for a serious experience: "Informed by my own experience, I came to the understanding that living with a physical impairment, even a temporary one, means that you are bound to face humiliation when you present your needs to other people". Oh how true and oh how unnecessary.

If the NYPL produced such a great program what is the problem? The audience was sparse at best. There was row after row of empty seats. To be blunt the auditorium was virtually empty. How can this be? Well, the program was held between 3 and 5PM when most people are at work. I am sure the fact it was 100 f. did not help audience turn out as well. Regardless of the time and heat, I am bitterly disappointed. Here we had name writers and a prestigious institution putting forth a great effort to enlighten the public and no one showed up. This is a giant social problem. To me it is indicative that few people give a damn about disability rights or the subject in general. Too many have a hazy idea that we passed a law about wheelchair access a long time ago and that the issue was solved. These people look at the little blue wheelchair logos plastered all over the place and don't give the subject another thought. My experience and that of all other people with a disability reveals how wrong this line of thinking is. Prejudice is rampant--a point Kuusisto made with force by relating his experience at Newark Airport. What gets me is why, 20 years after the ADA was passed, does ignorance abound? Why don't people care? Why do people perceive disability as some sort of personal tragedy devoid of any civil rights implications? Kuusisto blames the university system as it relates to rampant unemployment. I for one blame the entire educational system for its refusal to make accommodations and the media for its simplistic portrayal of disability as being nothing more or less than a personal tragedy. Kriegal, like most New Yorkers, is simply pissed off. Combine our views and a realistic portrait of disability, disability the social experience, emerges. If this is something readers want to learn more about go to the other scheduled events New York Library has planned. I assure you there will be plenty of room.

CBS Missed the Point as Does the New York Times

Last May I wrote about Brendan Marrocca who appeared on CBS news. Mr. Marrocca is a quadruple amputee who lost his limbs in Iraq and was not expected to survive his wounds. Mr. Marrocca's life after his injury was reduced by CBS to a feel good story--see my post of May 17. In my estimation the real struggles Mr. Marrocca encounters, the social struggles that people with a disability know too much about, were glossed over. A recent story in the New York Time has added a twist to Mr. Marrocca's post injury life story. In a July 2 story, "Spirit Intact, Soldier Reclaims his Life" by Lizette Alvarez, it is reported Mr. Marrocca will undergo a double arm transplant. Like CBS, Alvarez describes Mr. Marrocca as an "inspiration to hundreds of other wounded service members". The New York Time story departs from CBS in that well over half the article about Mr. Marrocca is concerned with the gory details of his injuries and survival. This makes great reading, satisfies the idle curiosity of others about Mr. Marrocca's disability but negates to illuminate many of the issues that will present the greatest obstacles. I was also struck by how unusual Mr. Marrocca's experiences have been. He still lives at Walter Reed Hospital with his brother who gave up his job with Citigroup. It is not explained why he and his brother live at Walter Reed--an experience that I assume is well outside of the norm for injured veterans. What is clear is that Walter Reed is a haven, in large part because he is a role model, and that the hospital provides a sharp contrast "to the awkwardness of the larger world". This "awkwardness" is something that I know something about--an interesting point that is mentioned in passing. To me, this omission represents a lost opportunity. Instead, we learn Mr. Marrocca's expenses, including the upcoming transplants, are underwritten by the military and that he gets a $2,700 a month salary. The reader could easily conclude Mr. Marrocca receives excellent care and that the military takes care of all its disabled veterans.

I hate to pour rain on the parade of good will but I have have a few questions:

Why is Mr. Marrocca still living at Walter Reed?

Why is Walter Reed, a hospital, considered a safe haven?

Why is Mr. Marrocca a "celebrity" and wished well by tour groups?

Why does Mr. Marrocca's family need to encourage him to leave "his Walter Reed fortress"?

I know exactly why Mr. Marrocca does not want to leave Walter Reed--the hospital is a social cocoon. Long ago when I was paralyzed I too did not like to leave the confines of the hospital. What I know in retrospect is that the hospital was accessible physically and culturally accepting and as a result I felt safe, almost normal. In addition, hospital denizens don't stare and ask stupid questions like "what happened to you?" On bad days I still know how Mr. Marrocca feels. I too find my social experiences awkward and draining emotionally. I never know when I will be accosted by a stranger that expects me to stop what I am doing and answer his or her questions no matter how inappropriate they are. According to his mother, Mr. Marrocca hates such negative social interactions. Now this is a story I would like to read about--"Returning Veteran Angered by his Social Experiences after Amputation". Unfortunately I have never read such a story. The reason such stories do not exist is because they would shed light on the failure of American society to accept people with disabilities as equals. Such a story might even raise issues such as rampant unemployment among people with disabilities, the lack of affordable mass transportation and housing etc. This is not a happy story. This story does not have drama. This story does not make the reader feel good. This story would make people without a disability uncomfortable. We cannot have that so what we get is superficial personal interest stories. I understand newspapers and television stories need to entertain but surely they can make the pretense of advocating social reform. For instance, at one point in the New York Times article Mr. Marrocca state that "this does suck". What is not clear is whether Mr.Marrocca is referring to the fact he is a quadruple amputee or the social encounters that lead him to shy away from leaving Walter Reed.

I truly wish Mr. Marrocca well. I hope that surgery goes well and he is able to become more independent. What I wish for even more is that people will stop being rude to him and countless others with a disability. I hope people will not stare, accept him for who he is, a unique person that has learned to adapt. This adaptation process is quite old and hardly unusual. I learned to adapt to my paralysis long ago but sadly society has been well behind the learning curve. This failure however is correctable, the law is on the side of people with a disability and all we need now is the social support for such rights and laws. This is a real story with grit. It is a human rights story that needs to be told and reported about.