YOU'LL NEVER WALK ALONE
Hugh Gregory Gallagher
(October 18, 1932 - July 13, 2004)The long day wanes; the slow moon climbs; the deep
Moans round with many voices. Come, my friends,
'Tis not too late to seek a newer world.- - - "Ulysses"
Alfred, Lord Tennyson
They tell me that in his last hours he complained about being put in "the Japanese Wing" of the hospital. I know exactly what he meant. He and I often found ourselves being shuttled off somewhere we didn't expect to go, often in the wrong wing, on the wrong day, with the wrong set of operating instructions.The first time we met was in the spring of 1953 at Warm Springs Foundation in Georgia, in the ward that was to be our home for the next five months. They put Hugh in the bed across from mine, and he looked over and saw that I was doing the New York Times crossword puzzle. He didn't know that I could never get much beyond the second definition, that it was all show. Even so, he told me later: "When I saw you and the New York Times, I knew everything was going to be OK."
If we had to be somewhere with polio fifty years ago, Warm Springs was the right place. It was one of the most genteel rehabilitation centers on earth, a place of fun and life and impressive care. We had come from dingy little hospitals all over the country and suddenly we were in the palace of the gods - - - with good and dedicated physical therapists and support staff, a graceful campus, wonderful food: a place which changed forever our feelings about ourselves, and our disease, and the man who had made this paradise possible.
We had fun there - - - me and Hugh and Margot and John and Leumel and Gary. Hugh and Joe Mack once organized a testimonial dinner dedicated to fungus. They wrote songs, made long speeches about the skin condition that affected those of us who didn't have the power to reach down to dry between the toes. The theme was "There's a Fungus Among Us."
Speaking of themes, Hugh reported to us with glee that the official song of the National Infantile Paralysis Society was
When you walk through a storm
Hold your head up high
And don't be afraid of the dark...
Walk on, Walk on
With hope in your heart
And you'll never walk alone...He was also the first to note that when they brought comedies for the weekly showing at the Warm Springs movie house, we were laughing but no one could tell because most of us had lost our diaphragm muscles, the muscle that the able-bods use to laugh, sneeze or cough. The only way you could know that we thought Red Skelton was funny was not by the sound of laughter but by the shaking of our bony shoulders.
§ § § It was fifteen years after Hugh left Warm Springs that he made disability rights not only his agenda but also the agenda of America. It happened when he was working as legislative assistant to Senator Bob Bartlett of Alaska.
At the time the Senate Office Building had no ramps, no curb cuts, no bathroom facilities for people on crutches or in wheelchairs. In the mornings, Hugh waited patiently in the Senate garage for someone to help him and his wheelchair up the curb. Sometimes it would be a janitor or a legislative assistant. A couple of times it turned out to be Wayne Morse or Robert Kennedy ("Very shy," Hugh said of Kennedy: "He said nothing as he set down his diet coke and notebook and helped me up the curb.")
At other times, there would be his personal bête noir, Senator Margaret Chase Smith. She was not there to help him up. Rather she would literally chase him out of the garage. "This space is for Senators only," she would grumble, oblivious to his wheelchair and to the reality of his life. Years later he would remark, "I suppose she thought the rules of the Senate garage trumped the problems of the state of Maine."
Hugh was a man who wore his dignity lightly, but there came times when dignity turned to indignity. He was indignant that while working on matters of state, as he once wrote, he had to beg for help to get up the stairs, into the bathroom, or "pee in a coffee can."
In 1968, he and Bartlett cooked up the Architectural Barriers Act which stated that all buildings "designed, built, altered, or leased with Federal funds" would be required to have ramps, curb-cuts and access to all facilities. It was their radical view that accessibility was a basic civil right for all.
The ABA sailed through the Senate on unanimous voice vote, passed the House as quickly, and was signed into law by President Johnson. And suddenly Hugh and I and everyone else in United States who moved about on crutches or in a wheelchair got a boost up.
I don't think it was much commented on at the time, and I think that was the way he wanted it. He wasn't much for prizes or acclaim. When his great grandson - - - the Americans with Disabilities Act - - - was passed in 1990, there was much foo-foo-raw on the grounds at the White House but he didn't join in the festivities. He loved working behind the scenes; loved seeing things that should happen happen; cared little at all for the encomiums.
He did enjoy the trappings of power, though. While he was working for the Senator, a lobbying group for chiropractics sent several of their members around to lobby for a tax-break. The official assigned to Bartlett's office came in, patted Hugh on the head, and told him that if he had been able to work with him earlier he'd now be out of his wheelchair, climbing the mountains. "He must have wondered later whatever happened to his tax-break," Hugh mused.
§ § § In New Mobility magazine for July 2004, there was a quote contrasting the disabled with what we have come to call "the temporarily abled." "My impression," a man named Hilton reports, "is that able-bods are mentally and physically 'soft.' Put head-to-head with an experienced, seriously disabled person in a daily living environment, even the toughest of them would crack within hours."
This brings to mind Gallagher's wonderful book about Roosevelt, FDR's Splendid Deception. My favorite section tells us what inspired him to write it. "This is what puzzled me so about the biographies of Franklin D. Roosevelt: the man was a paraplegic, yet this important fact is given very little attention. FDR's disease and seven years of convalescence are treated as an episode in an early chapter in these books and never mentioned again. This is absurd and unreal."
A visible paralytic handicap affects every relationship, alters the attitudes of others, and challenges one's self-esteem. It requires meticulous minute-by-minute monitoring and control to an extent quite unperceived and unimaginable by the able-bodied. This condition of being handicapped generates a range of emotions, whether expressed or not, that must be dealt with, not just at onset, but continuing throughout the rest of the patient's life."The central key to understanding FDR's personality and motivation - - - the impact of his handicap - - - has been all but ignored by historians," he concluded.§ § § Gallagher had great passions. I would guess that I am not violating his privacy by revealing to you that he lived in the thrall of passion for the last thirty years of his life. I knew some of them, knew their names. Like the Iliad and the Odyssey, Richard II and Henry IV, Swan Lake and Petrushka. Tchaikovsky, Homer, Stravinsky, Herodotus, Marlowe, Shakespeare.
Especially Shakespeare. He used to complain bitterly that when he was very young his mother would read to him from Winnie the Pooh. "Why didn't she read Shakespearian sonnets to me?" he wondered. Instead of poetic tributes to the 'Noble Young Man,' and 'The Dark Lady,' it was
The more it snows (TiddlyPom)
The more it goes (TiddlyPom)
The more it goes (TiddlyPom)
On snowing.His special love was Tennyson, and he could recite, from memory, countless lines from "Ulysses" and "Tithonus:"
"The woods decay, the woods decay and fall,
The vapours weep their burthen to the ground,
Man comes and tills the field and lies beneath,
And after many a summer dies the swan."§ § § Gallagher was my buddy but sometimes I like to think that he was my twin as well. We went through so many things together: euphoric success, total breakdown, irresistible aging. We would talk on the telephone six or eight times a month. Our conversations would range over so many thoughts and acts and misdeeds and regrets and sorrows and joys and pleasures and woe.
I especially recall the weekend he found he could no longer transfer from bed to chair by himself. What some may think of as just another hitch was to him a profound tragedy for it threatened the one thing he most feared: losing the ability to be independent, to be on his own, to be free of the helping hands. He spent that particular weekend alone, in his house, grieving profoundly, grieving yet again over an irreplacable loss.
The day he discovered the extent of his final illness he called up several of us. I was out, so he only got my answering machine. "Lonzo," he said - - - outside of one other, he was the only one in the world I would ever tolerate calling me that - - - "Tell Lonzo that I am dying. I'm calling people to tell them I am dying."
Ah, Hugh. No fiddling around. The doctors have told you what's going to happen and you call your friends and tell them. You do not do that for an extra jolt of love or compassion but because these are the facts. You are dying and it's common courtesy to tell those who love you.
I called him back. He told me he was "busy dying." He said that he had gotten to the "Ah-me" stage. Ah, me. Not lashing out at the gods, not immersed in self-pity, not even questioning. Just "Ah ... me."
Over the years Hugh was in terror, as most of us disabled are, that in his final years he would be forced to spend his last cent on doctors and hospitals and end up in a nursing home. In my call I said that I guessed he no longer had to worry about that. "Now you can squander," I said. "Where will you go?" He said he was going to go to St. Petersburg.
"St. Petersburg, Florida?" I said. I always figured that as the retirement home of Nurse Ratched.
"No, no," he said, "St. Petersburg, Russia. To the Hermitage Museum. I've been meaning to go for some time now. And afterwards we're going to have dinner in a pre-Czarist restaurant."
"This is the first time I've been mortally sick, Lonzo. My telephone is tired," he said, "and I'm tired too." And that was the last time I heard his voice.
§ § § On the 14th of July, I woke to the sound of a mourning dove, perched in the bay tree just outside my window - - - a bird I had never heard in the many years I'd been living in this part of California.
It only stayed around for a couple of days ... and then was gone. Which made sense. I figured Hugh had other lands to visit, other suns to conquer. I saw it as an honor not only to know him for this last half-century, but to hear from him right there at the end, before he took off.
Just like Hugh, I thought. To fly down to let me know that everything was OK ... that he was on his own again. Coming back one last time to let me know that I shouldn't be fretting about him anymore.