Still Me

by Christopher Reeve

  Just to take one aspect of it, one in five of us has some kind of disability. You may have an aunt with Parkinson’s disease. A neighbor with a spinal cord injury. A brother with AIDS. And if we’re really committed to this idea of family, we’ve got to do something about it.

  First of all, our nation cannot tolerate discrimination of any kind. That’s why the Americans with Disabilities Act is so important and must be honored everywhere. It is a civil rights law that is tearing down barriers both in architecture and in attitude.

  Its purpose is to give the disabled access not only to buildings but to every opportunity in society, I strongly believe our nation must give its full support to the caregivers who are helping people with disabilities live independent lives.

  Sure, we’ve got to balance the budget. And we will.

  We have to be extremely careful with every dollar that we spend. But we’ve also got to take care of our family—and not slash programs people need. We should be enabling, healing, curing.

  One of the smartest things we can do about disability is invest in research that will protect us from disease and lead to cures. This country already has a long history of doing just that. When we put our minds to a problem, we can usually find solutions. But our scientists can do more. And we’ve got to give them the chance.

  That means more funding for research. Right now, for example, about a quarter million Americans have a spinal cord injury. Our government spends about $8.7 billion a year just maintaining these members of our family. But we spend only $40 million a year on research that would actually improve the quality of their lives, get them off public assistance, or even cure them.

  We’ve got to be smarter, do better. Because the money we invest in research today is going to determine the quality of life of members of our family tomorrow.

  During my rehabilitation, I met a young man named Gregory Patterson. When he was innocently driving through Newark, New Jersey, a stray bullet from a gang shooting went through his car window . . . right into his neck . . . and severed his spinal cord. Five years ago, he might have died. Today, because of research, he’s alive.

  But merely being alive is not enough. We have a moral and an economic responsibility to ease his suffering and prevent others from experiencing such pain. And to do that we don’t need to raise taxes. We just need to raise our expectations.

  America has a tradition many nations probably envy: We frequently achieve the impossible. That’s part of our national character. That’s what got us from one coast to another. That’s what got us the largest economy in the world. That’s what got us to the moon.

  On the wall of my room when I was in rehab was a picture of the space shuttle blasting off, autographed by every astronaut now at NASA. On the top of the picture it says, “We found nothing is impossible .”That should be our motto. Not a Democratic motto, not a Republican motto. But an American motto. Because this is not something one party can do alone. It’s something that we as a nation must do together.

  So many of our dreams at first seem impossible, then they seem improbable and then, when we summon the will, they soon become inevitable. If we can conquer outer space, we should be able to conquer inner space, too: the frontier of the brain, the central nervous system, and all the afflictions of the body that destroy so many lives and rob our country of so much potential.

  Research can provide hope for people who suffer from Alzheimer’s. We’ve already discovered the gene that causes it. Research can provide hope for people like Muhammad Ali and the Reverend Billy Graham who suffer from Parkinson’s. Research can provide hope for the millions of Americans like Kirk Douglas who suffer from stroke. We can ease the pain of people like Barbara Jordan, who battled multiple sclerosis. We can find treatments for people like Elizabeth Glaser, whom we lost to AIDS. And now that we know that nerves in the spinal cord can regenerate, we are on the way to getting millions of people around the world like me up and out of our wheelchairs.

  Fifty-six years ago, FDR dedicated new buildings for the National Institutes of Health. He said that “the defense this nation seeks involves a great deal more than building airplanes, ships, guns, and bombs. We cannot be a strong nation unless we are a healthy nation.” He could have said that today.

  President Roosevelt showed us that a man who could barely lift himself out of a wheelchair could still lift a nation out of despair. And I believe—and so does this administration—in the most important principle FDR taught us: America does not let its needy citizens fend for themselves. America is stronger when all of us take care of all of us. Giving new life to that ideal is the challenge before us tonight.

  Thank you very much.

  JUILLIARD SCHOOL COMMENCEMENT ADDRESS

  May 23, 1997

  First of all, I want to thank Dr. Polisi for writing all that down exactly as I dictated it to him [citation honoring Reeve delivered by President Polisi]. It’s a real thrill to be here again; I was a student here only twenty-four years ago. And I remember the first production I saw in the Drama Division was The Night of the Iguana by Tennessee Williams with an actor named Robin Williams playing an old man. And I thought, If he can do comedy, we’re all in trouble. He was absolutely brilliant. I have such warm memories of being here, although I remember we always flattened ourselves against the wall anytime John Houseman went by. It was truly terrifying. And I also remember that at any moment you could be invited upstairs for a little chat and suddenly told that perhaps you should go into computer programming instead. And people suddenly disappeared, and there was nothing left but an empty locker. And yet, if you survived four years here, you emerged as one of the best actors or directors or musicians or opera singers that this country can produce. And while you had to work on technique, while you were often intimidated by teachers, you really had their support. And the most important feeling that you got was that this institution supported you.

  Now the difficult part comes, because out in the world institutions basically are against you in too many cases. And in my recent experience I’ve seen a parallel between the world of disability and the world of the artist when it comes to institutions. Just to give you an example, you may have seen on 48 Hours last week a mother crying to the insurance company about why her son can’t have a [special] chair so that he can take a shower, and being denied by the insurance company. In my own case, when I left rehab I was told that I could have only twenty hours of nursing a week; but I am dependent on a ventilator, and if it fails, I am in very serious trouble. Would they provide a backup ventilator? No. Fortunately, I was able to afford one, but what about all the people who can’t? I talk to some of the executives of insurance companies. And I say, Why is this? Why don’t you take care of people? People who have paid their premiums, people who are in need. And they say, Well, we’re in the risk management business. And I say, You should be in the people business.

  For the last nine years or so with The Creative Coalition, I’ve been working to help save the National Endowment for the Arts. I remember sitting down with some of the opponents of the endowment, people supposedly with IQs in triple digits. And I say, What is your problem with the NEA? Don’t you realize what it does for your community, not only in terms of the quality of life but even just economically? And they say, Well, we shouldn’t be just giving handouts; if an artist is any good he’ll succeed. So, let’s follow the logic of that. Have we trained, have we gone through all this so that we can in a calculated way create art to succeed only in the marketplace? That would be a tragedy for this country and for the world.

  Another opponent of the NEA said, Why don’t all of you who make tremendous amounts of money in Hollywood get together and fund the arts? Let’s think who the top moneymakers are in Hollywood—that would be Sylvester Stallone, Arnold Schwarzenegger, Jean-Claude Van Damme . . . What a wonderful peer-review panel. How would you like to be the artistic director of the Alaska Repertory Company and come before that panel to ask for funding for a season? It’s ludicrous.


  The point is that in the thirty-year history of the NEA, hundreds of thousands of grants have been given out. It has created arts education in schools. It’s brought art, music, dance, and drama to underserved areas, and in all that time there may have been some twenty controversies, twenty or thirty. And yet the NEA is an easy political football.

  Back in 1990 there was indignation over Mapplethorpe and Serrano. Now that’s past, and instead, the opponents are vitiating the National Endowment for the Arts by just taking away the money. A few years ago $167 million was spent on the arts. That’s a mere pittance; it comes out to sixty-four cents per person. In Sweden they spend three dollars per person on the arts. And think of the rich diversity of culture they have. Now the budget is down to about $98 million. So rather than object to content, they just take away the funding. That has to change. We have to fight.

  The point I want to make to you, the graduating class, is that the institutions may be against you. As you go out in the world as artists, these institutions, politicians, the corporate world, the people who make policy about what art should be presented and what should not, they may give you a very hard time, much harder than the time you had developing as artists in this place. But never forget that even if an institution is against you, the people are for you. Because the people in this country want the arts. In a recent survey 61 percent of the American public felt more money should be spent on the arts, and in fact over the last twenty years more people have gone to art galleries, to museums, symphonies, opera, dance, and theater than to all sporting events combined.

  And so you may not immediately find a chair in the symphony orchestra, or be hired by a great dance company, or find a home in a wonderful repertory theater, because times are tough and money is scarce. But don’t lose hope. Don’t give it up, don’t sell out. Don’t let them take your integrity. You are artists, and that is one of the highest and most noble callings that you could possibly attempt in this country today. Stick with it. My hat is off to you. You have achieved something wonderful. Never let go of that vision. We need you. Congratulations. And thank you very much.

  TESTIMONY BEFORE THE SENATE APPROPRIATIONS SUBCOMMITTEE: LABOR, HEALTH AND HUMAN SERVICES, AND EDUCATION APPROPRIATIONS

  June 5, 1997

  Fifty-seven years ago someone struck with a then incurable disease spoke these prophetic words: “We cannot be a strong nation unless we are a healthy nation. And so we must recruit not only men and women and materials but also knowledge and science in the service of national strength.”

  These are the words of President Franklin Roosevelt, taken from his address at the dedication of the National Institutes of Health in October 1940. It’s remarkable that even as war was raging in Europe and as the United States stood on the brink of entering that conflict, President Roosevelt had the foresight to recognize the importance of our nation’s investment in medical research to its national security.

  The question today is whether our current president and the Congress have the vision and wisdom to heed the words of Franklin Roosevelt and recognize the vital role played by medical research in the economic and health security of our nation.

  I firmly believe that medical research is key to eliminating disease, reducing human suffering, and reducing health care costs. Heart disease and cancer, the two leading causes of death among Americans, constitute nearly one-fifth of America’s health care bill. The costs of Alzheimer’s disease—which devastates 4 million Americans and currently costs our nation $100 billion each year—are expected to increase dramatically as baby boomers age.

  The economic costs of disease—not to mention the human costs—are truly staggering. Parkinson’s disease afflicts nearly a half million Americans and costs our nation at least $6 billion a year. Nearly a quarter million Americans live with varying degrees of incapacity due to spinal cord injuries. We spend $10 billion annually merely to maintain them. A half million Americans suffer strokes each year, costing more than $30 billion for medical treatment, rehabilitation, and long-term care, as well as lost wages. Diabetes, which afflicts nearly 16 million Americans, costs our nation between $90 billion and $140 billion annually and is the leading cause of blindness, kidney disease, and limb amputations.

  How do we stop the economic and human cost of these diseases? Research.

  When I met with the president in May of 1996, he stated that the ratio of research to clinical results is greater in this country than anywhere else in the world. Money spent on research brings practical results that absolutely justify the investment. Let’s look at a few examples.

  NIH-sponsored research has resulted in the identification of genetic mutations that cause osteoporosis, Lou Gehrig’s disease, cystic fibrosis, and Huntington’s disease. Effective treatment for acute lymphoblastic leukemia (ALL) has been developed, and today nearly 80 percent of children diagnosed with ALL are alive and disease-free after five years.

  Because of research the nature of medicine is changing. We are approaching disease at the cellular level. We are targeting problems earlier, more specifically, less intrusively, with greater success and fewer side effects. Advances in genetics will soon let us intervene in disease before symptoms appear.

  Significant progress is being made in the battle against cancer. As recently as ten years ago AIDS was a virtual death sentence. Now individuals with extremely low T-cell counts are often able to rebuild their immune systems because of new protocols developed at the NIH and NIH-funded laboratories. Scientists are now talking about the possibility of an AIDS vaccine, just a few years ago that would have seemed like science fiction.

  In 1988 the Swiss neuroscientist Martin Schwab discovered two proteins that inhibit growth in damaged mammalian spinal cords, a revolutionary finding. Until then it was believed that the cord’s inability to regenerate was due to the absence of nerve growth factors. In 1990 Schwab induced nerve regeneration in the rat spinal cord by blocking the inhibitory proteins with an antibody called IN-1. With adequate funding it is estimated that Schwab’s antibody could be adapted for use in humans within the next one to two years.

  When we recall that ten years ago a spinal cord injury was considered a hopeless condition, this progress is truly extraordinary. Similar progress is being made in the treatment of Parkinson’s, MS, stroke, and other related diseases because research has led to a greater understanding of the complexities of the brain.

  We must not stop this progress because we are unwilling to commit enough money to get the job done. It is imperative that the public—and more important our elected representatives—understand that research today is not speculative. It is not a waste of money. It is the only way to relieve suffering while helping to save the American economy at the same time.

  Making this a reality demands an investment of real dollars—funds that just don’t fit within the constraints of the Budget Agreement passed by Congress this week, which proposes to reduce overall health spending by $ 100 million next year and by more than $2 billion over the next five years.

  That’s why I support Senators Specter and Harkin’s proposal to establish a National Fund for Health Research to provide additional funds over and above the annual appropriations for the National Institutes of Health. The Specter-Harkin bill proposes taking one penny from each dollar paid in insurance premiums, which would result in as much as a $6 billion increase a year for the NIH.

  Some experts say that this bill will never pass because of the strength of the insurance lobby. However, recent experience has shown that even the most formidable lobbyists cannot derail legislation that has bipartisan and public support. The NRA was not successful in repealing the ban on assault weapons.

  The American public watched in disbelief as a dozen tobacco company executives testified at a Senate hearing that nicotine is not addictive and denied allegations that nicotine levels were being raised in cigarettes in order to increase addiction. Now we are witnessing the demise of the Marlboro Man and Joe Camel. There are lawsuits in virtually every sta
te by individuals demanding punitive damages against the tobacco companies. Just this week thousands of government workers petitioned the president to ban smoking in government buildings. I sincerely doubt that the tobacco lobby will be able to stop this initiative.

  The religious right led by Pat Robertson, Pat Buchanan, and the Christian Coalition tried twice unsuccessfully (in 1992 and 1996) to hijack the Republican Party and failed in both attempts. Here again was a case when a supposedly powerful lobby did not succeed in promoting their agenda.

  I also know from personal experience, as a lobbyist for the National Endowment for the Arts, that in spite of five years of arguing strenuously about the economic benefits of the arts in thousands of communities across the nation, in spite of mobilizing arts groups from around the country annually for Arts Advocacy Day, in spite of showing statistics that 61 percent of the American people believe more money should be spent on federal funding for the arts; we watched in dismay as Congress turned a deaf ear and reduced the NEA budget from $167 million a year to a hopelessly inadequate $99 million. This has resulted in the loss of critical seed money to thousands of orchestras, dance companies, theaters, and museums. It is not only a serious setback to the quality of life in this country but further proof that Congress can and does ignore a strong lobby with tremendous grass-roots support when they so desire.

  I have spoken to executives at several insurance companies about this bill and have been told that their profit margin is so small that the donation of 1 percent of their income is an unreasonable hardship. Personally, I find this about as credible as the tobacco companies’ claim that nicotine is not addictive. It is hard to sympathize with insurance companies when you watch a mother in tears begging for a chair so that her quadriplegic son can take a shower. In my own case I have been denied coverage for any physical therapy below the level of my shoulders in spite of the fact that leading researchers repeatedly stress the importance of cardiovascular conditioning and the prevention of osteoporosis and muscular atrophy in preparation for the functional recovery that spinal cord research will very likely achieve within the next few years.