Wednesday, May 29, 2013

A Big Hug for Paco


A Big Hug for Paco

By:  Langdon Winner

"It's a very fine essay," he said, "and I agree with most of it.  But that's not how we think about the situation now."  

It was the summer of 2010 in Madrid. I was enjoying a Fulbright scholarship and had been given an office in the philosophy division of CSIC, Consejo Superior de Investigaciones Cientificas, the Spanish equivalent of our NSF. As a way to introduce myself to the research fellows there, I'd shown them some of my writings, including a copy of an essay, "Is There a Right to Shape Technology?", one that describes the movement of people with disabilities as an example of possibilities for the democratic shaping of architectures and technologies. I thought the piece did a pretty good job making clear how a political theory of "rights" could be realized in situations where concerns for technical utility, efficiency and profit usually prevail and how steps of that kind could expand people's experience of citizenship.  

The first of the CSIC group to respond was Francisco "Paco" Guzm├ín, a man in his middle thirties, a brilliant physicist turned philosopher and sociologist.  "Your arguments about rights and democracy are quite good," he observed, "but all the language about 'disability' and 'people with disabilities' isn't helpful.  In fact, those terms pose a barrier to the kinds of freedom and social justice you obviously want to promote."  

Although Paco offered his comments in a sympathetic way, I was unsettled by them. I'd spent some time studying the history of American and international movements of "people with disabilities" from the 1960s to the present and had pondered the theoretical and conceptual issues widely debated the scholarly literature.  I thought I had approached the matter in an intelligent, respectful manner, including scrupulous avoidance of  "able-ism" and the kinds of prejudice and discrimination that outmoded perspective entails.  Yet here was a friendly person telling me that my thinking was badly flawed.  

"The problem is," Paco continued, "that putting people into the categories of 'abled' and 'disabled' is extremely limiting.  It leads us to suppose that you're essentially either one kind of person or the other kind when that is simply not true."

"I suppose you're right," I replied, "but I don't know how to get beyond that way of describing the basic situation here.  It's possible to take the trouble to describe specifically what kind of disability or impairment a person has in hearing, eye sight, paralysis in the limbs, and so forth.  But the  condition boils down to a stark either/or.  Some people exist within biological and cultural definitions of "able" or "normal" while others -- through no fault of their own -- are 'disabled.'  Are you saying we can move beyond that?"

"Most definitely!" he exclaimed. "For the past decade or so, scholars and activists in Spain have been using the concept of 'diversidad functional,' or 'functional diversity' in English, to describe the wide range of features that people's bodies can have.  There are a great many ways that human beings can 'function' given various physical or intellectual traits whether inherited or acquired.  Rather than lump these into two basic, essential categories, it's better to recognize the variety of these features and their functions.  When you take that step, the philosophical and practical questions become ones about diversity -- how to understand the important, sometimes problematic conditions and how to manage them in intelligent, fair-minded ways."  

The basic truth and implications of what Paco was saying struck me immediately and have grown in my worldview ever since.  The basic insight is that of thinking about the world, its creatures and their possibilities is vastly aided by recognizing plurality and diversity.  We know, for example, that what people used to talk about within the broad, essential category of "sex" has gradually been redefined as a range of phenomena better described in terms of gender and sexuality.  Growing recognition of people in LGBT communities, along with new ways of understanding matters of ethnicity and race, have profoundly changed the ways we think about what it means to be human.  We live in a diverse and multiply blended world, a world that has enormously positive possibilities, but also one whose dazzling complexity many people find distressing, even threatening.  

A growing awareness of plurality and diversity within humanity takes a new turn when one raises the question that Paco posed for me that afternoon: Upon which spectrum or, more to be more accurate, upon which set of spectra can the the features of one's body and its capacities be placed?  In that light, the ways in which any of us are more or less "functional" in the world are vastly multiple and open to improvement or decline given one's situation, the wages of time (e.g, aging), the effects of social policies, and a host of other factors.

I should point out that Paco, the one who taught me this valuable lesson three years ago, held somewhat different positions on the spectra of functional diversity than some of the characteristic features in my own body.  As our conversation unfolded, he spoke through a little electronic amplification box that always accompanied him, one that enabled his barely audible voice to be heard across the table.  Born with little or no use of his hands, arms and legs, he moved about the world in a wheel chair pushed by his wonderful mother, Pacquita, or by one of the assistants he employed. In the familiar, conventional sense, his much of his own functional capacity was highly limited.  At the same time he had a brilliantly creative mind, wonderful sense of humor, talent for friendship, profound grasp of a wide range of philosophical and political issues, and (as he demonstrated on that first day and all our conversations since) an extraordinary talent for exploring questions in a graceful, generous, fruitful manner.  

During the years following my summer in Spain, Paco and I stayed in touch online and in person.  Whether by prior arrangement or just showing up by surprise, he would attend the talks I gave in Spain now and again.  On one occasion he delivered a paper for a graduate course I'd helped organize in Copenhagen.  His co-author, Mario Toboso, also from CISC, was present in person while Paco spoke to us on the screen via Skype.  Because he wanted very much to travel to the USA we briefly explored the possibility that he might spend time at the new Ed Roberts Campus in Berkeley.  I had known Ed Roberts in classes during my student days at Berkeley, celebrating his rise in the late 1960s a leader in campaign for the rights of people with disabilities in the USA.  Although Paco's  contributions to the movement came later and had a different character, I would not hesitate to place him on the same level as Roberts.  Both of them helped us think about the world in astonishing and beneficial new ways.

While Paco's ideas on "functional diversity" were the subject of a book and several papers he was writing, he was a truly public intellectual, active in political campaigns that emphasize the need for social change that could improve the lives who diverse functioning places them out of the conventional mainstream.  When the streets of Spain erupted with massive political demonstrations during the Spring of 2011, Paco appeared at one of the rallies to read from his wheel chair a declaration of principles for people whose condition of functional diversity required special attention by the social service agencies of the city and Spanish governments.  In fact, he was proud of social reforms in his country that enabled him to live as independently as possible rather than warehoused in a home for people with special needs.  The last time we talked was one evening last October in coffee shop in downtown Madrid. After a leisurely conversation he and Pacquita proudly showed me the new car they had bought for their mobility with family funds and some financial assistance from the government.  The vehicle featured a special built-in ramp that enabled him in his wheelchair to roll into rear of the vehicle and be quickly secured for the ride. I later told some mutual friends that I'd seen a wonderful new invention, "The PacoMobile."  

Although his positions on key policy questions were firm and strongly reasoned, he always presented them in fair, considerate manner.  During one conversation, I asked Paco about his position on abortion, a matter fiercely debated among people with particular kinds functional diversity.  He took the time to explain his views in detail.  The short version is that he favored on principle a woman's right to determine whether a pregnancy should be brought to term.  At the same time he strongly opposed a stipulation in Spanish law that extends the time period for ending a pregnancy if there is evidence that a child might be born with a significant disability.  "That part of the law is discriminatory," he explained.  "It says that certain kind of babies can be aborted beyond the time limit legally established in other cases.  While I strongly support a woman's right to choose, there should be no extraordinary extensions.  Such exceptions simply cannot be justified." 

I regret to say that Paco's days of thinking, writing, conversation, and living life to the full with his family and friends came to an end recently.  Early this year he suffered a series of illnesses that slowed him down.  Shortly after a stay in the hospital in March he contracted pneumonia and passed away.  He left behind a poetic, visionary, reassuring statement of farewell, "Panegirico."  At memorial services in his honor, friends and colleagues recalled their joy in his companionship.  Recently a columnist for El Pais, Rosa Montero (who had never met him in person) paid tribute to his accomplishments and enduring spirit.    

As a personal matter, I miss him terribly.  I will continue reading his works, teaching his ideas in my classes, especially ones that ponder philosophies of design for a better world.  He embodied that rare gift --  a joyful wisdom.

It is the custom in Spain to give friends a hug when you meet them and again when one leaves a social gathering.  With the group of scholars at CSIC I would join the practice of "abrazos" (hugs) all around.  But for a while I could not figure out what to do with little Paco resting there in his wheel chair.  So I would simply raise my hand and wave hello or goodbye.  One day, however, I thought to myself, "Hey, this isn't right!"  I told Paco of my discomfort and asked, "What should I do?" 

He smiled and said softly, "I accept hugs."  After that, when meeting or leaving, I would always bend down and hug him around the shoulders.

So it was.  And so it remains.  Abrazos, Paco.