A Song in the Night (10 page)

I persuaded Senator Jackson and some of his staff that there were serious questions which deserved examination. Senator Jackson eventually sent an official letter to all the major pharmaceutical companies that made blood products, asking them for more detailed information about the supply, manufacture, safety, pricing, and distribution of their products.
We received two kinds of answers. Some companies sent us boxes and boxes crammed with promotional brochures, irrelevant memos, shipping manifests, factory manuals, and other loosely related material. The other companies sent us a single-page letter, which, in not very subtle but still highly legal terms, told Senator Jackson to go to hell.

Jackson was not happy, and his team discussed pushing the investigation to a higher level of intensity. They began to consider issuing subpoenas and holding hearings in order to get to the bottom of what was going on. This process unfolded over many months. We made progress, but the staff became distracted because Senator Jackson was preparing to run for president of the United States in 1976. At the same time, they kept me working on the project.

One morning I received a surprise phone call from the minority counsel, the head of the Republican staff of the committee. He wanted to meet with me personally—now. I was perplexed. Senior Senate staff members of one party do not usually summon interns from another party to hold urgent private meetings. I mentioned this to my immediate boss at the time, and he said, “Go see what he wants.”

I walked through the immense hallways of the Russell Senate Office Building, passing office after office of different senators, with their great mahogany doors and American and state flags standing majestically in the hallways. My feet clicked and echoed on the vast marble floor. When I reached my destination, I was ushered immediately into the minority counsel’s office. He was seated behind his desk with his hands folded.

“Sit down,” he said.

I did.

“I have asked you to come here because I understand that Senator Jackson is considering issuing subpoenas in the pharmaceutical investigation.”

I said nothing.

“I have consulted with the ranking minority member of the subcommittee, Charles Percy, and he has a problem with that. Specifically, he has a problem with
you
.”

I was shaken. Percy was one of the most famous senators in the country, widely considered a decent man and a Republican moderate. He was also from Illinois, the home of most of the pharmaceutical manufacturers. The minority counsel continued with an edge to his voice.

“We believe that your personal medical situation makes it completely inappropriate for you to be involved in any investigation of this industry. So we have decided that we will consider supporting this investigation only if you withdraw from it. You must recuse yourself immediately and completely. If you don’t, we will block any subpoena. So it’s your choice—the investigation either stops here or you quit and give it the chance to go forward.” He paused for effect and then waved his hand. “Now you can go.”

I walked back through the long corridors in shock, realizing that I had just been exposed to my first direct case of political hardball. When I returned, I told the majority counsel, who was furious. Together we went to Senator Jackson, who was equally angry that the Republicans had called me in
private. Jackson was a realist, and he said to me, “Bob, you know this presidential thing is coming up, so I would have a lot of trouble forcing this through right now. If I am elected president, you will come see me at the White House and we will use my authority to find out what is going on. And if I lose, I will return to the Senate and we will crack this resistance right here.”

I left his office and thought, Well, something is going to happen; there is just going to be a delay. But Jackson did not win the nomination—that went to Jimmy Carter—and I gave up my position in the Senate. When Jackson returned to the Senate, he was swamped with foreign policy problems. A few years later he died suddenly, at the age of seventy-one. The subpoenas, the investigation, and the hearings never took place.

Between Watergate, the endless agony of the Vietnam War, and the crushing of the pharmaceutical investigation, I decided that I had seen enough. I was finished with politics.

In the fall of 1974 I had enrolled as a freshman at Princeton University, a bastion of dazzling opportunity and privilege. My father, my uncle, my doctor, and my godfather had all earned scholarships from Tennessee to attend Yale, and my initial idea had been that this was where I might go. When I applied to Yale, however, I encountered some harsh physical realities. Though I was now able to walk without braces, my knees remained weak. I still had joint bleedings, which would
regularly confine me to a wheelchair for a week or more. Seen through this lens, the Yale campus presented many barriers. It had been built with the assumption that every student would be perfectly mobile. Classrooms could be reached only at the top of long stairways in buildings that were far apart. The mostly Gothic design of the dormitories and refectories, bunched together in “colleges,” meant that everyone had to navigate through a maze of difficult hallways and stairs. The architects seemed to have been committed to the idea that every passageway or building entrance required at least three randomly placed steps.

Moreover, Yale was in the middle of a city, New Haven, so the students traveling between class and college activities had to cross urban streets all day long. Cities at that time did not build curb cuts to allow wheelchairs to roll smoothly from sidewalk to crosswalk. As I looked around, my heart sank when I realized that I could easily be confined to a small room, missing events and classes, forcing classmates to carry cold plates of food from distant dining rooms back to my point of incarceration. And while the admissions office expressed concern about my problems, no one was all that eager to discuss or to solve them. The Americans with Disabilities Act had not yet passed the Congress, and indifference or insensitivity toward people with disabilities was still more the rule than the exception.

This was in direct contrast to Princeton. After I was admitted, the admissions office designated a specific person to help me resolve each difficulty. Though the campus was self-contained,
it was still hard for me to navigate on foot. We hit on the solution of obtaining a small electric cart that would transport me from class to class. The university promised to put in external electric plugs anywhere I needed them—outside my dorm room, the dining room, and the major classroom buildings—so I could charge the cart as necessary. If I had a bleeding and needed care, I would be permitted to enroll directly in the school infirmary, without the usual medical review, so that I could have a quiet place to recover, three meals a day, and easy access to friends who would drop by with my assignments. The university offered to exempt me from the lottery for dorm rooms so that I could find the right room. If I experienced a lasting problem, the authorities said, they would even reschedule my class discussion groups to meet on the first floor so I did not have to climb stairs to attend.

Of course the academic opportunities at both institutions were superb. I understood the tremendous privilege that each represented. Change was rippling through both universities and many other elite institutions as they tried to find a way to balance their traditional exclusivity with their desire to be more diverse. Every college in the country, including the Ivy League schools, was trying to figure out how to boost their enrollment of students disadvantaged by race or class and give them the support that would guide them toward success. Yale and Princeton had also just fought major battles with their own conservative alumni, who did not want them to admit women. The first women at Princeton had arrived only five years before I enrolled, and the first full class that included women had just graduated.

Schools were new to the issue of how—or even whether—to support students with disabilities. For some schools, the idea of admitting students with disabilities seemed perhaps to contradict the idea of gathering together “well-rounded” participants who were fully equipped to compete and to succeed. Subtle differences in attitude led to huge differences in outcomes. One school, with the best of intentions, told me, in essence, that it would be content for me to come as long as
I
could conform to
its
reality. The other university reversed the equation, saying, “We know that we need to change and that we have not been welcoming to some people in the past. Our goal is for you to feel fully included and to have everything you need while you are here to succeed.” In response, I gratefully picked Princeton.

I arrived on campus and plummeted into the whirlwind of freshman year. During the first few weeks I was ecstatically happy. The campus was remarkable, but my new friends proved the greatest asset of all. Gathered from around the country and the world, representing innumerable backgrounds, drawn by different interests, they were electrifying. Given their array of talents, I also felt queasy. The man who became my first roommate and best friend was named Stephen Chanock. From Washington, he was tall and handsome, with a tousle of curly black hair. He was a swimmer who had competed nationally. He had scored higher than anyone I had ever met on all of his advanced placement tests. He was a math whiz. He played the piano beautifully and planned to be a composer. Or a doctor. Or both.

My mild anxieties did not prevent me from doing what all
freshmen do: I overcommitted. I signed up for a broad range of courses, including first-year Russian, which met twice a day. I attended meetings and poked my nose into campus politics. Over dinner my friends and I engaged in long philosophical conversations in which we all made firm pronouncements on topics about which we were completely uninformed. I even went to see the coach of the swimming team, who was famous for being gruff. I told him that I was slow and often had trouble walking but that I wanted to work out in the practice pool near the swim team.

“I don’t care about your performance,” he said, “I care about your commitment. If you are in the water every day at exactly seven
A.M
. and then again at two-thirty
P.M
. and you stay for the full workout both times, you can participate.”

For the next nine months I kept up the schedule. When I returned the following fall, the coach handed me the team roster with a silent, knowing smile. I scanned the list and realized with astonishment that he had listed me on the swim team. The idea was absurd—I was the slowest swimmer in the group and could not really compete at the varsity level—but he had recognized my tenacity. I have rarely been as proud.

In my room, and whenever I left the campus, I always carried a small canvas bag that I referred to as my “shot bag.” It contained everything I needed to treat my hemophilia on short notice: 23g butterfly needles, 30cc syringes, medical tape, alcohol prep pads, bottles of sterile water, tourniquet, ace bandage,
ice bag, and small boxes of the critical freeze-dried Factor VIII concentrate on which my body depended if my joints started to bleed. I didn’t take it to class or to meals, but otherwise it went with me everywhere: on every car ride or trip, to every off-campus meeting or dinner party or movie; on visits, on vacation, and on airplanes. It was not life-threatening for me to be without it, but whenever a joint started swelling—which usually happened without warning—a delay in mixing up and injecting the Factor VIII could mean the difference between a few hours and many weeks of painful limitations. Though I rarely thought about the bag when I was carrying it, I instantly knew when it was missing.

It was my chain and my lifeline for decades. I had had to administer infusions of Factor VIII as often as five times a week since I was twelve years old. No matter where I was, no matter how late at night or how inconvenient the moment, I had to stop whenever I felt a slight swelling and slip away to some private place where I mixed up the medications, strapped a tourniquet on my arm, and then inserted a needle into a vein. I had performed such injections in every conceivable venue: at parties, in airplane bathrooms, in train compartments, under the beam of a flashlight on camping trips. Even as my veins became filled with scar tissue and the skin on the surface turned an unappealing shade of blue, I rarely missed. My friends gradually became accustomed to this peculiarity, and some of them were even willing to witness the infusions.