Friday, May 23, 2008

Remembering Charlotte


May 23rd was her birthday. She would have been eighty years old today.

In one of my favorite photographs of Mom, she is holding our daughter Alex, who was then about three and is now a college sophomore. A Minnesota summer downpour in the park had sent us all scrambling under a shelter. Mom had wrapped a picnic blanket around herself and Alex to keep them both warm. There’s something about the picture that captures Charlotte—the tenderness in the way she holds Alex, very much in the moment, yet gazes directly into the camera with a smile for the ages. It’s all there in a snapshot. The inner warmth, the intelligent eyes that took everybody in, and always—even in the most disheveled scene—an insouciant elegance.

She was born in 1928 in a tiny Nebraska town surrounded by farms, on the eve of the Great Depression. Her father, a Methodist pastor, died four years later, leaving a thirty-four-year-old widow with six children.

Mom grew up with a sense of grand possibilities in the face of tragedy and suffering. She didn’t go to movies, as a rule, but she saw
Gone with the Wind when she was eleven and always remembered the circular staircase. She once told me that she thought, at the time, someday she would live in a house like that.

Her parents were products of a 19th-century American Protestantism that was disciplined, yet optimistic and expansive. In some ways, she was a late Victorian character—steeped in the sort of Christian piety that was mixed with romance and adventure and longing.

She gave up her dream of an elegant life to pursue an errand to the world. She became a missionary in Ecuador, where she lived an elegant life after all.

My earliest memories of growing up in the jungle are punctuated with scenes at her candlelit dinner table, set with linen and china. I am squeezed between boarders and guests, listening to my mother tell the stories of the day. It’s a faraway place and time with no television. There’s a soft drum-roll of rain on a tin roof, but you can hear her voice over all that and there’s music in it.

She lived a narrated life. Sometimes to a fault. Everything that happened to her was a great story, and she just had to tell it. She believed deeply in personal morality, but perhaps even more in redemption and second chances for everybody—and in the relentless grace of God. That was the greatest story of all to her.

I remember once getting into a childhood scuffle with my older brother Tod. When my mother intervened, Tod deployed his superior legal advocacy skills and convinced her that the whole thing was my fault; that I had started the fight, and that he, Tod, was merely defending himself. He might have been right; he usually was, then, and still is. Notwithstanding my self-righteous protests, Mom sent me to my room on charges of fraternal battery and insubordination.

In a tearful rage, I stomped away and slammed the door. She came after me, opened the door to my bedroom, and pronounced the following sentence from the hallway: “I want you to stay in there and read your Bible—and don’t come out until you have found a verse that speaks to your condition!”

The Bible is a dangerous book in the hands of a child in a fix like that—especially a child with the caliber of scriptural research skills that my mother had by then instilled in me. (I not only owned my own King James version, but one with an excellent concordance in the back.) That said, Mom had a lot of faith in the Bible as the answer to every predicament, and it turned out to be well-placed in this instance. I emerged about twenty minutes later, the picture of contrition, with my Bible open to Psalm 69. I had underlined several of the following verses in a thick-leaded pencil:

I am weary of my crying: my throat is dried: mine eyes fail while I wait for my God.

They that hate me without a cause are more than the hairs of mine head: they that would destroy me, being mine enemies wrongfully, are mighty. . .

Because for thy sake I have borne reproach; shame hath covered my face.

I am become a stranger unto my brethren, and an alien unto my mother's children.

Let their table become a snare before them: and that which should have been for their welfare, let it become a trap.

Let their eyes be darkened, that they see not; and make their loins continually to shake.

Pour out thine indignation upon them, and let thy wrathful anger take hold of them.

Let them be blotted out of the book of the living, and not be written with the righteous.

* * *

In May, 2001, I traveled to Quito, Ecuador, to say goodbye to my mother as she approached the end of her battle with ovarian cancer. I sat beside her bed one afternoon and watched her sleep. As the day faded, the sun set over the Andes to the northwest and the snows of Mt. Cayambe took on a rosy glow. Mom always loved this scene from her window, and I almost roused her to see it, but she was napping so peacefully that I decided not to wake her.

A Bible was lying on her nightstand, as always, and for no particular reason I picked it up and started thumbing through it. The Good Book fell open, as if by itself, to a well-worn passage: Psalm 69. In the margin, Mom had written: “Jeff’s Psalm.”

That was almost forty years ago, I thought. Why did she remember something like that, after all this time?

There’s a lot of pain and conflict in Psalm 69. Mom knew that exquisitely, of course. And then it dawned on me: She wasn’t thinking of a child when she inscribed it “Jeff’s Psalm.” This was a Bible of much newer vintage, and I was an adult with three children of my own.

She had underlined some other verses in the same Psalm—words that come later and are quite different than the ones I had showed her as a child. I hadn’t noticed those verses then, or didn’t recall them. I read them now:

Hear me, O LORD; for thy lovingkindness is good: turn unto me according to the multitude of thy tender mercies. . .

The humble shall see this, and be glad: and your heart shall live that seek God.

For the LORD heareth the poor, and despiseth not his prisoners.

Let the heaven and earth praise him, the seas, and every thing that moveth therein.


I flew out at dawn the next morning. Three weeks later, she died. I miss her still.

Sunday, May 11, 2008

When the Roll is Called

[Many thanks to all of you who read “Graduation” and took the time to contact us with warm wishes on the occasion of Angela’s college commencement. An especially touching e-mail arrived from Syd Spiesel, the kind doctor in Connecticut who took care of Angela when she was first born, and who figured in the story. How wonderful to hear from Dr. Spiesel after twenty-three years; to learn about his own family and his second career as a part-time medical journalist. Another friend, a Harvard professor, wrote to say he remembered hearing what must have been the same health-policy lecture in graduate school that I described in my post; that his first child, too, was born prematurely--at the same hospital as Angela a few years before--and grew up to become a television reporter. Angela’s graduation was, indeed, a joyous event for all of us. A number of her close friends from Burris Hall came back to campus for the occasion. What follows are some additional reflections on the journey that brought us all to that day.]

Not long before his untimely death in 1994, the eminent sociologist Irving Kenneth Zola came to speak at the University of North Carolina at Chapel Hill. On the day of his lecture, an eager audience awaited Zola, but he couldn’t reach them. Traveling from Boston, he was unable to complete the final leg of his journey: two flights of stairs to the room where he was scheduled to speak. Zola was in a wheelchair.

When the professor’s hosts realized what had happened, they were mortified and quickly moved the event to an adjacent building with an accessible room. Zola gave an engaging and provocative talk on the universalizing of disability policy. Everyone went home happy and it made a great story--with a twist of irony that academics love.

I had a different reaction to the story. I had begun to imagine that our daughter with cerebral palsy might someday attend college, and I wondered about Carolina. It’s an elite public university in our home town, renowned as much for its progressive academic culture as for its graceful Georgian campus. But something troubled me. What if it hadn’t been Zola in the wheelchair? What if it had just been a freshman who wanted to hear Zola speak?

Years later when it came time for Angela to apply for college, I called the admissions office at UNC and asked whether they had on-campus housing arrangements for students with severe disabilities. “Oh, yes,” the housing director assured me. “We're fully ADA-compliant. There are ramps into all the dorms and accessible toilet stalls with grab bars.” A discouraging word, knowing what Angela would really need.

Then one day my friend Bob Drake told me about St. Andrews. Bob is a psychiatry professor at Dartmouth, but once lived in North Carolina and befriended an extraordinary young man named Andre. Bob’s friend Andre attended St. Andrews and took Bob to visit Burris Hall. Bob couldn't say enough good about the place.

“They built a barrier-free campus in the late 1950s!” he exclaimed. “No university was even thinking about handicapped access back then, but this little private college did it. It’s amazing. Now they have a special dorm with twenty-four-seven staffing. All these kids in wheelchairs--they call them ‘the Wheelies.’ It’s a term of endearment and comraderie and they’re just a part of everything there.”

Bob told me he had attended graduation one year at St. Andrews. His eyes glistened.

* * *

May 3, 2008 dawned a glorious day in Scotland County, North Carolina. The morning sun gleamed on the lake as mystical strains of bagpipes approached from a distance and then passed quickly by, to be followed by the St. Andrews faculty--strutting like peacocks in their academic plumage--and finally the class of 2008.

Interspersed among the striding blue robes were five young people in wheelchairs, rolling along as relentlessly as the marching bagpipers into whatever world may come.

She was one of five former residents of Burris Hall who graduated that morning. As I listened to each name being read and watched these accomplished young men and women ascend to the dais and receive their diplomas, I recalled how unlikely it had seemed only three years ago. It had been a long journey into this bright day, from the dark night of 2005.

That was when the letter arrived saying they were closing Burris.

The Jack Burris Rehabilitation Center--or Burris Hall, as it was called--had been a place like no other. Just as Bob Drake had described it, Burris was a special dorm for students with severe disabilities located improbably on the residential campus of a very small and intimate liberal arts college. For three decades, Burris held an extraordinary place in the heart of St. Andrews--personifying a campus culture and community that was inclusive, interdependent, and infused with hope. St. Andrews was a college that seemed genuinely committed to “doing good”; Burris was the visible face of that commitment to the world.

With twenty hospital-style beds and round-the-clock shifts of personal care assistants and nursing staff, Burris provided an opportunity for generations of young adults with severe physical limitations--many with life-threatening medical conditions--to achieve something monumental: attain a high-quality liberal arts education in the embrace of a nurturing campus community; reach their intellectual potential; and take their place as valued and productive members of society.

When I first took Angela to visit Burris during her senior year of high school, she found it overwhelming. Afterwards we sat by the lake under the bell tower and watched the sunset. She cried. She said it seemed like a hospital. She had never been around people with disabilities. At East Chapel Hill High, she was the only one in a wheelchair, but she didn't really see herself as so different--it was just that everyone else did. She watched high school life go by as if through a plate-glass window.

The next year, after two months of living in Burris, she never wanted to leave.

The “Wheelies” of St. Andrews forged lasting friendships. They knew and loved each other for who they were. And they had the great good fortune of attending a college where they were appreciated for what they could do and contribute--rather than being defined by what they would never become, could not do, or by the burden they placed on others.

In the fall of 2003, President John Deegan delivered an eloquent address upon taking the helm of the College. He spoke of St. Andrews’ unique mission and special character and said that he considered this small place to be a “national treasure.” I was moved by his speech that day. The qualities he spoke of were exactly the reason that Angela had enrolled at St. Andrews. Here was a college community that opened its arms to people like her, in a way that almost no other institution of higher education in this country had done.

Two years later, near the end of Angela’s sophomore year at St. Andrews, John Deegan decided to close Burris. He announced it without any warning, by sending a letter to the students as they were leaving for spring break. The reasons were financial, Deegan suggested. He offered no alternative arrangements for the Burris residents to remain at St. Andrews. The letter vaguely stated that the College would counsel each student regarding their “transition,” as Burris would close after one final year. But Deegan failed to answer the obvious question: “Transition to where?”

We were stunned. When we came to our senses, we told everyone we knew. An avalanche of letters and e-mails soon descended on President Deegan and the Trustees. Impassioned pleas from aunts and uncles, friends, distinguished professors and deans from other universities, alumni--all implored him to step back, take another look at what he was doing, and reverse the decision. He did not. Like many men with power under siege, John Deegan dug in.

At first, we thought it was about the money. People wrote checks. The Burris students held fundraisers and sold T-shirts that said “Don’t Make the Wheelies Walk.” There were rumors of serious offers from people of means to endow Burris. Deegan must have rejected them all.

In the end, none of it made any difference. Burris closed in 2006. The following academic year, Deegan resigned.

Some of the Burris students left college. A few graduated in the final year that Burris remained open. But a remnant of the underclassmen doggedly insisted on staying at St. Andrews, pressing the administration to accommodate them. After all, this was their college, too. They were students in good standing--several of them in the General Honors program. Everything their professors had taught them about social justice and responsibility demanded that they protest the actions of their college administration--respectfully but insistently--and thereby save the College from itself. It was a personal issue and a moral one.

Some of the Burris students' parents became more strident in their dispute with the College. They talked of litigation and consulted lawyers, parsed the ADA and learned terms like "promissory estoppel." But the aggrieved students themselves--the would-be plaintiffs in any legal action that might have been brought--never wanted to sue St. Andrews. They loved the place. They just wanted to come back next year and be with their friends and professors. And they wanted to graduate like everybody else.

When it came down to literally seeing the Wheelies leave, the College caved. They offered a compromise--a temporary arrangement that would allow the remaining displaced Burris students to stay on campus and complete their degrees. They offered a block of accessible dorm suites in another residence hall, on the condition that the students and their families would contract privately with a health care company to come in and provide the needed twenty-four-hour personal care assistance.

By the end of the summer of 2006, eleven of the displaced students signed contracts with an outstanding and compassionate company called Interim Health Care, Inc. Still, the costs would have been prohibitive for the families. Generous funding from the North Carolina Division of Vocational Rehabilitation made the impossible a reality.

I asked Angela, at one point, whether she appreciated what it took to get this temporary arrangement in place so she could complete her college education. She said she missed Burris. She missed it not only for herself and her friends, but somehow for the generations of future students with disabilities who would never have the opportunities that Burris provided to her. Something rare and valuable had been lost.

Burris gave Angela a second family--one that allowed her to be herself, to find her own place and identity in the companionship of a nurturing group of people who were like her and understood her in ways no one else could. It allowed her to reach out and make a contribution to others, rather than always being on the receiving end of help.

Whenever you went to Burris, you’d find the students gathered together in the wide hallways or in somebody’s room--six or seven wheelchairs in a traffic jam. They were laughing and talking. One with an electronic speaker board. Another with a trach. Another typed with her feet. Some could speak quite eloquently just by changing the expressions in their eyes and on their faces. If someone said something that the others couldn’t understand at first, they asked the person to repeat it and listened patiently for as long as it took. (For some of them, it took a long time.) They helped each other with homework. They were boyfriends and girlfriends. They ordered pizza and watched baseball games together. They dressed up for the Christmas dance.

There was a lot of love at Burris. Enough to spill out and wash over the entire college. The larger campus community of St. Andrews is impoverished because that family is gone.

* * *

The pointy-headed academics and the professional advocates will argue about it. They will anguish over the tension between autonomy and paternalism, cost and benefit. Some oppose congregate residential facilities for people with disabilities on principle, insofar as such arrangements can seem to reinforce stigma and difference, foster dependence, and segregate disabled persons from society. Instead, some advocates argue for highly individualized “self-directed care” and universally accessible housing that is in no way set apart from the rest of the community.

In my view, such utopian arguments collapse of their own weight when applied to college students with severe physical disabilities; they place too much emphasis on individualism and self-determination at the expense of supporting the value of human community where we find it. They fail to recognize that some people will become more, not less, socially isolated and marginalized as the result of such a policy--and ultimately less productive over their life course.

Nevertheless, universities and colleges have used arguments for self-determination and integration, and even weirdly invoked the federal Americans With Disabilities Act (1990), to justify a cost-driven decision not to provide on-campus twenty-four-hour attendant staffed housing for students with disabilities.

There were never more than a handful of college-based facilities like Burris. Now almost none remain.

* * *

Angela once told me a story about an incident at Burris, which I have come to see as an apt metaphor for their small community and what happened to them. It was a cold autumn night and they had a fire drill. The students were sent outside for quite a long time. Angela’s roommate, Hope, had been typing with her feet and had no socks or shoes on. Her feet became very cold. Hope was unable to speak, but her friends could see that she was shivering. And so it was Mark, with quadriplegia, who called to one of the aides and asked them to remove his size-twelve shoes and put them on Hope's tiny feet. “Hey, I’m paralyzed,” Mark said, “I can’t feel my feet anyway.” They all laughed. But then the “fire drill” happened for real. They were put out of Burris--the place that had been their home together--and the doors closed behind them forever. They didn’t know where they would go or what they would do, but they looked to each other for strength, comfort, and good humor. From each according to his ability, to each according to her need.

Angela and her friends who graduated last week arrived at the end of a long procession--a line stretching back three decades. It’s a roll call of remarkably talented and courageous young adults who got a decent college education because of Burris Hall, and because of the forward-looking commitment of a tiny private college. God bless them. These students now number probably in the hundreds. How many other lives they have touched is a number no one can guess.