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Judy’s Visit, or Willowbrook Gone Right

Judy's Visit“Unearned suffering is redemptive.”
(Martin Luther King, Letter from Birmingham Jail, Atlantic Monthly, August, 1963)

It reads strange, even wrong, to write this title. Given what happened at Willowbrook, how could it have “gone right?” That’s something that requires explanation.

I teach at the College of Staten Island that occupies the former campus of the infamous Willowbrook State School. We work, teach and study in the same buildings in which people with disabilities were subject to neglect and abuse in the extreme, these conditions being notably exposed by the reporter Geraldo Rivera in 1972. Other than me, few faculty teach about disability or Willowbrook. Sadly, awareness on campus among students, faculty, administration and staff about what happened there is very minimal.

Over the years I have gained some knowledge about the place and recently completed a long manuscript about its history and sociology. It is this knowledge that allowed me to write this story. To appreciate it as a story requiring telling required an understanding of what happened at Willowbrook and its significance in the history of disability.

I teach a class each semester that ends with a presentation by the Self-Advocacy Association of New York State (SAANYS). This is a group founded by Bernard Carabello, a former resident of Willowbrook regarded by many as “the face” of Willowbrook. Bernard was part of the story of the closing of Willowbrook State School, and became a friend of Geraldo Rivera afterwards. After Willowbrook closed, Bernard, and other people with developmental disabilities in New York City, formed a self-advocacy association. Their effort has resulted today in one of the largest self-advocacy state organizations in our country.

Teaching about disability at CSI makes the idea of having the last class taught by people with developmental disabilities-- who might have been residents of Willowbrook back then—is a fantastic, powerful way to conclude my courses. I have been doing this since 1988, when I arrived at CSI, and this is an account of their most recent visit.

They were late. When I came to class, there was no one from the group, which is unusual. After giving an impromptu background of the history of self-advocacy, they still hadn’t arrived. Quite unusual! But, then I see out in the hall one of the group, a wonderful woman named Lisa who has cerebral palsy and has lectured in may class several times. I said hello and asked her what was going on with the other presenters. She’d come on her own, by bus. Others were coming by car, some by Access-A-Ride. These last words strike fear in my heart as there has been a history of problems with Access-A-Ride on campus.

A few minutes later the SANYS staff member, Danielle, a person without disability who is responsible for coordinating the event, arrives. She’s driven in with another presenter, found parking and she tells me that she is now is waiting for Judy, who has all the paperwork they need for their presentation. Judy’s coming by Access-A-Ride. She tells me that until Judy arrives, it would be hard for them to begin their presentation as she has all the required papers and forms. As we are discussing what to do, I notice that an Access-A-Ride bus has pulled up in front of the drop off point, about a quarter mile from my building.

I ask Lisa if she would take the class while Danielle and I go and help Judy off the bus. She agrees. I introduce her to the class and say, “Class this is Lisa. Lisa, this is my class. Lisa is going to be teaching until I get back from helping another panel member who just got here.” I left knowing Lisa would have the class in the palm of her hand, as she had before.

Danielle and I went to the Access-A-Ride drop off. When we got there, there was only one person on the bus; she was in the back, near the rear lift, apparently waiting to be let down. I noticed that Judy was a middle-aged person with short-cropped grey hair, in a large motorized wheel chair, and that she had a dot in the middle of her forehead, which I assumed was a religious, maybe Hindu, marking. Danielle went immediately back to speak with Judy, while I talked briefly with the driver who informed me that Judy’s wheel chair would not work and so she was unable to leave the bus.

I went back and Danielle corroborated that Judy was having a problem with getting her chair to move. Judy, I could see now clearly, had cerebral palsy. It appeared that she could not move her hands or legs, or speak. After some confusion about what she wanted, Danielle said, “You want me to change your dot?” To which Judy indicated ‘yes’ via a vocalization and movement of her head. The dot, I was then told, was Judy’s connection to her wheelchair, and to her augmentative communication device (apparently it reflects light that is able to activate the computer’s screen, now how cool is that?). Once Danielle changed her dot, she was able to reactivate the wheel chair controls, and she was soon unloaded from the bus.

I told Danielle to go back to the class and help organize things, that I would walk with Judy. She agreed. Then said, “Do you know, Judy used to live at Willowbrook?”  I didn’t. But I immediately realized how ironic the situation was; a person who had lived at Willowbrook is coming back, but this time to lecture in a college course.

I talked as we wheeled/walked. I asked her if she had been back to Willowbrook since she left? She indicated in an utterance that she had not. “Must seem strange to you,” I said. “Eeeyeah,” was her response.

As we walked I told her about the campus, the old and new buildings, and how the campus was reconstructed. I told her about “the Willow Brook,” what was here before Willowbrook State School, about which she was very interested. At one point it struck me, “how is she driving her wheel chair?” Judy could not move her hands, arms or legs, so how was she wheeling along on her own?  Looking carefully I found that she was using her headrest to control her wheel chair. Apparently, Judy could control her chair by leaning her head. I asked her about it, and she confirmed my observation.

Judy was back at Willowbrook. Instead of being ignored or abused, being unable to do virtually anything to control her own life, even to move from one place to another, she was now independently wheeling along on her way to teach a college course.

When we arrived at class, we found the students, as I guessed, totally engrossed in Lisa’s narrative. Another speaker had also arrived, so we took the occasion to let Lisa finish up her talk (she was speaking about romance, sexuality and disability) and allow the other presenter to speak. 

Judy was the last to present. Before she began I ‘spilled the beans’ and told the students that she used to live at Willowbrook. Judy used her augmentative communication device, which had in memory a lot of material she had prepared beforehand. She responded to questions related to the stored narratives, which concerned her current living circumstances (she lives in her own apartment with 24 hour support staff), her life at Willowbrook (sadly sounding like too many other narratives I have heard) and her marriage (Judy was married for over ten years). Particularly striking to the class was that Judy had been sexually active in her marriage.  Because of the degree of her disability the class, and probably most people met her, assumed that she did not have a sexual life. She not only had that, but within a relationship that was romantic and deeply felt. She spoke about her husband dying recently and how she missed him terribly.

Judy was a book that could not be judged by its cover. This is true for many people with severe disabilities. It’s a basic lesson that I want to communicate to my students about the nature of disability, and Judy could not have been a better teacher. Her contribution to their learning was immense.

During her talk she took great pleasure in the class’s interest in her technology. At one point, she raised her wheelchair up to a height that was unsuspected. Spontaneously some students went up to her and began to ask questions about her wheel chair and her speaking device.

Even before Judy began lecturing I had the sense of this occasion as being a “perfect moment” in teaching. I was literally in tears during her talk. I could not imagine a better lesson to my students about disability, or Willowbrook, than was being provided by Judy. The students surrounded her and she reveled in their interest.

At some point toward the end of class Danielle announced that Judy was late for her Access-A-Ride. Again, the mention of that name made me apprehensive. Access-A-Ride = problem.

One of my students went ahead to the pick up site. The bus was there and he told me later that he had told the bus driver to wait and that Judy was on her way to the bus stop. As far as I knew when Judy left, things were fine.

I have office hours after my class and several students came to discuss their final papers. After meeting with them I decided to take a walk over to the Access-A-Ride stop to make sure Judy was picked up and on her way. It was about forty minutes after class had ended. I found her and Lisa at the bus stop, standing in the cold. Lisa told me that the bus had left. That she had called Access-A-Ride to try and arrange for another bus to come but the woman who she talked to had not called her back. Lisa is a smart woman but with serious enough apraxia that it can be sometimes difficult to understand her. Thinking about the situation, I decided to call Access-A-Ride and try to sort things out with them. I also suggested that while I take care of this they go inside the lobby of the building where it’s warm.

I’ll shorten the story here. Save it to say that it took a few calls to get the situation resolved, especially since two rides, one to Manhattan and then one to Brooklyn, were involved. When I finally got a dispatcher who was kind and who understood the situation, I was able get Judy back home, and with a ride scheduled to arrive in about an hour.

Lisa needed to catch her bus home, and Judy really could not be left on her own, so I went to the Office of Disability Services, which happened to be in the same building, and asked the Director, Chris Cullari, if there was a way he could help Judy out, by having someone make sure that she made the second bus, and to let her hang out at the Office in the interim. Without hesitation he asked one of the student workers there to accompany Judy and look after her. That was about 3:00 and Lisa was able to leave Judy and get her own bus. I went back to my office hours, and Judy, as I found out sometime later, went into the Office and hung out with the students there. Apparently they were very interested in her and she had a good time talking with them. Access-A-Ride finally showed up, at 5:15, an hour late.

Judy’s visit is an occasion I will never forget and as this writing indicates is something I think is important enough to communicate to others. Willowbrook was an affront to humanity—an expression of what is worst in us and there should be no misunderstanding about this. But Willowbrook also became a symbol of the ability of ordinary people to confront politically organized evil. Because Willowbrook was so infamous and because of its closure, Willowbrook also became a symbol of positive change, in fact a sea change in the field of developmental disabilities.

Judy’s visit is emblematic of this sea change. It is a story of a fomer Willowbrook resident, a woman with severe disabilities who was able to triumph over her circumstances and live a meaningful and independent life of her choice. But also a story about how Willowbrook itself has changed, from an institution that exploited and damaged persons with disabilities, to a College at which these same persons can be recognized as the valuable citizens and people they are. I cannot describe how I felt at seeing Judy in my class, or with how our Office of Disability Services immediately responded to her plight. It was… Willowbrook gone right.

David Goode
Professor of Sociology
College of Staten Island
January 5, 2011


 
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