We, at ABILITY, were delighted by the invitation to interview Christopher Reeve. We were anxious to know about his personal progress. He has been consulting with physicians worldwide, and we knew of his full agenda working on behalf of cures for diseases of the central nervous system—a great many speaking engagements, television appearances and the establishment of a foundation to support this work.
We also knew Christopher has been thrust into the role of spokesperson for the national disabilities community, and we are aware that this doesn’t appear to be going especially well. We concluded it would be informative to talk to him, discuss recent developments and issues about the disabilities movement, and to gain Christopher’s view of the controversies about his role in these various activities.
Our plan for the interview included facilitating a telephone link between Christopher and disability activist, Dr. Frederick Fay. We met with Christopher and his wife, Dana, at their home in New York, in the woods—a reasonable commuting distance north of New York City.
Our collective first impression was that we were in a house designed for a large man. Generous rooms, big chairs, not a lot of furniture, sort of rough and ready—a place for people who want to experience and make the most of every season. On closer examination, it seemed that the fundamental sensibility at work was accommodation to a person using a wheelchair. Hardwood floors, not many rugs, a very operational space. It is not a house appointed by an interior decorator; instead, it is the home of a family whose overriding design scheme is to choose things that are personally meaningful—objects were selected because the people who there like them.
As the day advanced, we didn’t change our minds about our early impressions—only the primary intelligence at work. It became obvious that the most important thing going on in this house is the thoughtful, considerate and supportive rearing of the children. It’s a kid’s house. It is a place for children to gain greater confidence and self-esteem. There are children’s drawings and paintings everywhere, on the walls and, of course, the fridge and cabinets. Evidence of developing awareness, special visions, further insights, and a loving family.
It is a lush, rural area, with a watercolor-esque pond visible through the window, not far from the house. Looking very much like Walden, it seemed an immense bottomless pond. That house was also a marvelous place for a conversation, a telephone link between Christopher Reeve and Dr. Fred Fay. And as a conversation between these men developed—ripened—it appeared bigger; a large place where large people gather to talk about large things; matters of being and of not being, individual responsibilities, heady social agendas, ultimate goals, final issues and what it means to be a person.
Not far into the conversation, it became clear that, whatever their differences, here were two men who liked—respected—each other. As time passed, a piercing light from the overhead window moved across Christopher’s pillow toward his face. “Would you like for us to close the curtain? The sun will soon be directly in your eyes.”
“No, it comes in every day at this time, it feels wonderful.”
The sun did fall across his face; it was hot, and Christopher perspired. It was a very personal, highly sensory experience—the kind of thing essential to feeling completely alive.
Background
When John Wayne first met Christopher Reeve at the 1979 Academy Awards, he turned to Cary Grant and said, “This is our new man. He’s taking over.” Fresh from starring in the hit movie Superman, Reeve was a hot property. Unfortunately, it was this very role which made it so difficult for Reeve to fulfill the promise Wayne and others had seen in him. Not because he didn’t have the skills, but because he had played the part of Superman so well.
Reeve would soon learn, like many actors before him, who once you’ve played the American icon and hero, that it’s tough to just drop the cape and tights for another role. Even a Julliard trained actor and Cornell University graduate who had played so many of the classics on and off Broadway had to come to terms with the fact that he was now typecast as a comic book hero. The image persists today, even after his 1995 accident. A soon to be released biography by Chris Nickson, entitled Super Hero, begins with the following passage:
“Christopher Reeve might have portrayed Superman in the movies, but no one thought he might really be a superman himself. Until May 1995, when he was thrown by his horse and left paralyzed. For many people, that would have been the end. They’d have simply given up. For Reeve,
check this out
The story has been almost too compelling not to make the allusion to his most memorable role. Yet, as we continue to know and recall him as the Man of Steel, we fail to notice that there has always been so much more to Christopher Reeve than the comic book hero.
In many ways, Reeve’s heritage reads more like an epic novel than a dime story picture book. He has traced his own lineage to the thirteenth century and the French aristocracy under the name D’Olier. During the French Revolution, several members of this family lost their lives. His great-great-great-grandfather, William D’Olier escaped to Ireland and then moved to Philadelphia during the Great Famine. Between William and Chris, the men in the family include a president of Prudential Insurance, a founder and commander of the American Legion and a celebrated literary academic. Christopher had a lot to live up to before he ever heard the name Superman.
As a child it didn’t look like he would fulfill many of these expectations. He was sickly and shy. When his parents divorced, he became ever more so, almost entirely drawing himself inward. Serious and often awkward, Reeve tended to gravitate toward solitary activities. He felt most comfortable honing his cycling, fencing, sailing, skiing and horse riding skills. His stepfather did not allow television in the home, so Christopher turned to reading and academia, much like his natural father, a professor at Yale and Wesleyan. Eventually, he found his life’s calling—the theater.
Between the ages of eight and 16, Reeve worked in a number of plays at the Princeton Day School, Princeton’s McCarter Theatre and, during summers, at the Williamstown Theatre in Massachusetts. At 16, he had an agent and was aspiring to attend Cornell University. In the heat of the early seventies, with Vietnam and Watergate boiling over on college campuses, Christopher ignored the activism and turmoil. Instead, he concentrated on acting, and it eventually paid off with an invitation to New York’s esteemed Julliard School for Drama. Here he met William Hurt, Kevin Kline, Mandy Patinkin and ended up rooming with none other than Robin Williams. The courses allowed him to polish his skills and complete his degree at Cornell.
Yet, before he could finish his time at Julliard, he was drawn away by his first acting job outside of theater. His role as Ben Harper on the Soap Opera, Love of Life, allowed Christopher to get a good apartment in New York City and eventually buy a small plane. He flew around the country like a barnstormer, often landing in a field and sleeping under the stars. One night in Chicago, the next night in New Orleans; all during the era of free love and a rising fame. While the temptations were enormous, Reeve stayed focused and landed a prime role on Broadway opposite Katherine Hepburn. His work there eventually led to the casting call for the role—Superman. A casting agent picked his photo out of a Screen Actors Guild file and saw he had the dramatic background to play the part.
Now, most actors would have been thrilled, but Christopher was never fond of comic books. In fact, he had no real childhood memories of the character. But, it was work, and it was a big budget movie. People often think Christopher won the part because he looked so good in the suit, but that was not exactly the case. Instead, it was his Clark Kent, glasses and all, that left the producer and director convinced. He had the ability to look and act like a nerd one moment and a super hero the next. There was little argument over his casting and he was sent on his way to Pinewood Studios in London to begin filming.
The producers had thought that Robert Redford, Paul Newman, Warren Beatty, Clint Eastwood, Ryan O’Neil or maybe even Bruce Jenner would play the part—but they got Christopher Reeve. Who was that again? The producers were so worried that Reeve wouldn’t draw an audience that they gave Marlon Brando the highest salary in Hollywood history, $3.7 million for twelve days work and a few minutes on film to play Superman’s father Jor-El. Reeve got $250,000.
Christopher had to look good in a suit, so he immediately started on a new diet and weight lifting regiment with David Prowse, the actor who played the physical part of Darth Vader in Star Wars. He increased his weight by thirty pounds and added four inches to his chest and three inches to his biceps. His bench press went from a measly 100 pounds to 350.
While getting lunch one day in his Superman costume at the commissary of Pinewood Studios, he stepped on the toes of a modeling executive names Gae Exton. He pursued her relentlessly and eventually got her to go on a date with him. When Superman was screened for the Queen of England, he took her along and introduced her to Her Majesty. Now, how could a woman not fall for a man in a Superman suit who takes her to parties with royalty? They became a couple and eventually had two children before separating in the late 1980s.
After a long and troublesome shooting schedule, with Reeve doing all his own stunts, Superman made its American premiere at a Special Olympics benefit attended by Jimmy Carter, Barbara Walters and Henry Kissenger, in Washington DC. In the first week of release, Hollywood realized it had discovered something special. When Reeve was asked how it felt to be a movie star, he remarked, “I don’t know. This is only the third day I’ve been one. Come back in a year and I’ll tell you.” The reviews were in and the writers loved him. One reviewer called him “ridiculously good-looking” and another “the living equivalent of comic-strip art.” The public loved it, as well, and the film became one of the highest grossing holiday season releases ever, eventually taking in over $300 million. When the Oscars came around, the film received four nominations and took home one award. While Chris was not nominated, he had arrived, and everyone waited to see what he’d do next.
He was being offered a very big script in Hollywood. He turned down Urban Cowboy, American Gigolo and Body Heat. When asked why, he remarked, “I found the idea of a man servicing older women for money quite distasteful… [And] I didn’t think I’d be convincing as a seedy lawyer.” Instead, Chris opted for a $500,000 role as the male lead in the romantic classic Somewhere in Time. Reeve justified taking the part of Jack Collier by reasoning “I like the character—a man who’s incomplete. He has all the material things he needs, all the comforts, but he’s missing a passionate commitment to something other than himself and goes in search of it.” Perhaps this role was not that far off of Reeve himself. During the filming the location, a small island in Michigan, was so inundated by fans, Reeve eventually made a deal with the crowds. He had to promise to tour the state and sign autographs after the shooting was done to get the production back on schedule.
When the movie was released, it seemed much of America, and certainly the critics, weren’t quite ready for Superman to play a romantic role in a fantasy period piece. But Christopher had already agreed to do Superman II, and for many of his fans they couldn’t wait. When it was released, the critics gave the film positive reviews and the box office reception was very strong.
Yet, Christopher fought hard, perhaps too much so, to distance himself from the image of Superman. In a string of films in the eighties, he chose roles in smaller budget films that would force him to be everything the Man of Steel wasn’t. In Deathtrap, a murder mystery with Michael Caine, he plated a gay psychopath. While his acting got some good reviews, people were clearly not ready to see Reeve kiss Caine on the lips. In his next film, Monsignor, he played a Roman Catholic priest who befriends Mafia members and seduces a nun!
His fans and the critics did not receive these efforts kindly and only reiterated their support for his career when he once again donned the tights and cape for Superman III with Richard Pryor. This time around, the film didn’t sit as well with critics, but was still a substantial draw at the box office. With this effort, Reeve seemed to be ready to please with his audience to let him leave the role behind him. In an interview, he remarked, “Look: I’ve flown, become evil, stopped and turned the world backward. I’ve faced my peers, rescued cars from trees. What is there left for Superman to do that hasn’t already been done?”
His next two films were indicative of the non-Superman roles and projects he had chosen in the past. Both were period pieces, the first was called The Bostonians and the second The Aviator. The latter was so bad that Reeve tried to convince the producers not to release it. He followed these two pieces up with yet another historical role in the CBS TV movie Anna Karenina. None of these efforts seemed to play up his strong point and did little to advance his career. Once again, Reeve had to pull out the cape for one last go at the super hero.
For Superman IV, Christopher received $4 million and got the producers to agree to support his own project, called Street Smart, as well. Both productions were troubled by money, and Superman IV was released with some creative editing before it was even done. Even so, a rough cut of Reeve in his most famous role did better than any of his other projects could.
Reeve was trapped, and he knew it. No matter how hard he worked for roles that would be the antithesis of Superman, his fans and Hollywood producers were not going to let him break away. When one understands the very nature of this entrapment, it becomes easy to understand why Reeve often cringes, even today, when people allude to him as a super hero.
With his career in question, and his personal relationship with Gae falling apart, Christopher seemed to be losing direction. He did what he knew best. He went back home and worked in the theater as much as he could. One evening, while taking a break, Reeve went to cabaret and became enamored with one of the performers on stage. Her name was Dana Morosini and, like Gae, he had some convincing to do to get her to go out with him. In the end, he won her over. Reeve was in love again and it revitalized him.
He began to become more involved with politics, campaigning to clean up the Hudson River and even risking his life by leading a rally in Peru against Pinochet government. Whispers and rumors circulated that perhaps Christopher might want to run for office. Yet, he never really took them seriously. He knew what he was—an actor, and he still had a strong desire to show it on the big screen—without the super hero costume.
He took a role in a moderate success called Switching Channels, which actually called for him to bleach his hair blond. But, this film didn’t turn his career around. He had lost the “hot” label and wasn’t getting any scripts. Without Dana Reeve, he may have fallen apart. But, his love for her and his continued work on the small stage and television kept him going. At 37, Reeve found that if he wasn’t doing films, he needed to fill in the gaps with something that was really important and could make a difference. He turned to the environmental movement and became a committed activist. He began narrating historical and journalistic documentaries and fought to preserve federal funding for the Arts. As he said himself, “Real life hit me in the face in the eighties.”
And in the early nineties, things began to look up again. He and Dana decided to marry and had a son of their own. After being virtually invisible on the Hollywood movie scene, producers started coming back. He worked on two well-received films back to back called, Morning Glory and The Remains of the Day. These roles were followed by his part in Speechless which also brought him good reviews. One critic wrote, “Mr. Reeve has quietly evolved into a versatile character actor… It’s only a matter of time before he is ‘officially’ rediscovered and celebrated, like John Travolta.”
Just as he seemed to be escaping the label of Superman and reviving his film career, a freak accident while competing in a cross-country horse competition left him paralyzed below his neck. Reeve thought of suicide as he woke in the hospital. With Dana at his side, he asked her if she would just “let him go.” As he recalls it, “Without missing a beat, she looked me right in the eye and said, ‘But you’re still you and I love you.’” From that moment, Reeve has committed himself to one day walking again. His work since the accident has been entirely indicative of this cause. He was the host of the 1996 Paralympics and gave a speech at the 1996 Democratic National Convention. He has kept busy with over fifty speaking engagements a year and worked as a director on a HBO movie called In the Gloaming. His political work has turned to reforming healthcare and increasing research money for the study of the spinal cord and central nervous system.
Ironically, his accident has only served to resurface the super hero allusions. One can almost see his discomfort on the inside when people bring it up. Of the 36 photos in his soon to be released autobiography, only one is of him in the famed Superman suit.
Christopher seems like a natural spokesperson for the disability community and the media has all but anointed him as such. People with disabilities have long been America’s largest minority group. Yet, for the most part, they have remained faceless in the public perspective. After the shock of the accident and relief for Reeve, people began to see a real opportunity to put a “face” on the disability civil rights movement. In fact, he seemed ideal for the job of spokesperson—an actor and political activist with enormous charm and a Hollywood smile.
This left Christopher Reeve staring at a fork in the road. From one direction, there was the potential that he could publicly lead an emerging civil rights movement for people with disabilities. From the other direction, there was the prospect that he could work for a cute—a get out of disability free card—which would not only allow many people with spinal-cord injuries to walk again, but also lead to therapies for other neurological disorders. The dilemma? It would be difficult for any one person to advance both causes at the same time. The need for a cure is best advanced by highlighting a normative need for people to be able-bodied. On the other hand, promoting civil rights for people with disabilities would involve encouraging people with disabilities just as they are.
The Interview
Chet Cooper: Christopher, are you aware that there has been controversy about you being considered a spokesperson for people with disabilities?
Christopher Reeve: I have heard of sporadic incidents. I think at one or two of my speaking engagements, there were people who wanted to meet me and talk about it. But, I don’t have any idea of the scope or the scale of the dissatisfaction.
CC: The concept, in general, is that you have been launched into position as a spokesperson for people with disabilities.
CR: I wouldn’t define myself in that way.
CC: But, that seems to be the perception in the country. With the media’s intense focus on your story, you are, in a sense, considered an advocate.
CR: I can’t speak for all people with disabilities because I have very limited knowledge of all disabilities. I am mostly aware of spinal cord injuries, Multiple Sclerosis, Parkinson’s Disease, stroke and Alzheimer’s—all the diseases that affect the central nervous system and the brain. I talk to researchers and mostly focus on those conditions. There are so many other things and I can’t take on the mantle of responsibility for everybody and all conditions.
But, I’m doing what I can to raise awareness. That was the purpose of the television special on ABC a couple of weeks ago. I mean, to get two hours of primetime on national television during the ratings sweeps was to not only highlight spinal cord injuries, but to also show at least three disabled performers, two comedians and a dancer, was frankly unheard of. Also, in my foundation, 30 percent of the money we raise goes to quality of life issues for people with disabilities. My personal vision and focus is on research, therapies, interventions and cures.
I feel I have the right to put my energies where I want them, as does any other individual with a disability. If some person with a disability says, “This is hopeless” or “This is a waste of time” and that I shouldn’t be doing that, then that is their opinion. It’s almost like any public figure, there are going to be people who think that Bill Clinton is the best thing that has ever happened to America, and there will be other people who think that he is lying and that he should run out of the office. There will always be differences of opinion about things when you are a public figure. I realize that’s part of the deal.
CC: So you, in a sense, have been launched as a spokesperson for an organization that you don’t want to be a permanent member of? What would you say to the person who had never been able to walk and never will, regardless of what happens with your research? Their belief is they don’t need to walk to be a whole human being. They are able to live a fully functional life, independent of walking.
CR: But, I’ve never said that they are less of a person. In my condition, I would prefer to walk rather than not walk. That’s where I am coming from, and if there are other people to whom that is not important, then that’s their choice and, you know, so be it. I am not judging anyone’s particular beliefs or value system. All I am saying that there are a lot of people out there in the same condition as myself that would rather not be in a wheelchair. We were not born mean to be living in wheelchairs. We were meant to be walking upright with all of our body systems fully functional, and I’d like to have that back. I was not elected, nor was I appointed. I never went out and said I would take on the mantle of representing all people with disabilities. I can’t do that. No one individual can.
One individual may be able to represent AIDS because it’s a very specific condition, but I don’t think there is anyone with AIDS who keeps wanting to have AIDS. The recognition after Rock Hudson’s death and Elizabeth Glazer’s child, the work that has been done by Elizabeth Taylor or by Betty Ford on substance abuse, have all happened because of a human face that people recognize and attach to the condition. And a lot of forward progress has been made. To ask me to represent all people with disabilities is unfair, and impossible.
CC: There are so many issues surrounding people with disabilities.
CR: And that’s why I can’t represent them all. I am not the spokesperson for people with disabilities.
CC: But, because of your marquee value, you are the most prominent person that I know of to have a severe disability. You are already changing the perceptions. The fact that you have a limited mobility but have remained as productive and active as you are, really shows the world some significant things about people with disabilities. Let’s get Dr. Fay to interject in this conversation.
Dr. Fred Fay: psychologist, community organizer, and political activist. Dr. Fay co-founded over a dozen organizations. He currently chairs the Democratic National Disability Advisory Committee and chaired the disability constituency for the Clinton/Gore campaign. He is also a founding board member of Justice For All, an organization formed to defend and advance disability rights in Congress. Fred Fay has a Ph.D. in Psychology. Paralyzed at the age of 16, years later he was diagnosed with a spinal cord cyst, which prohibits sitting upright. In 1987, he developed his “Power Wheel-bed.” It gets him around his house and acts as his communication center to the world.
Dr. Fred Fay (via teleconference): I’ve been following you in the world wide web.
CR: Is someone running a web site that chronicles what I am up to?
FF: Yes, there are actually several with a whole lot of information on the various TV shows and movies you’ve involved in and a detailed history of your recovery and lifestyle. I’m wondering how accurate they are? Now, I see that you’ve been very busy and successful in focusing public and media attention on spinal cord issues. What is your sense on how long it might take to find a cure?
CR: Well, I think it will be a combination of approaches. They are working on gene therapy, nerve cell transplants and regeneration. It seems they believe regeneration is the best answer. You don’t have to regrow the whole new spinal cord. In effect, you just need to bridge the gap. This was proven to me the other day when I was at UCLA and I was put on the treadmill. Just like you’d find in any gym. I was suspended in a parachute harness with my full body weight on the treadmill. As the treadmill moved, my right leg went back and my flexor muscles in my hip picked up my leg and transferred the weight to the other one and I moved forward and walked with a practically normal gait without any information coming from the brain. It almost seems like the spinal cord has a memory of what to do. For people who say you need to bridge the gap, which for my case is only 20 millimeters, that seems to be very probable to me. Of the leading researchers in the world, I regard the number one man as Dr. Martin Schwab in Zurich. He has achieved a full recovery in rats who have had their spinal cords transected. On a scale of 0 to 14, where zero is no movement and fourteen is normal, the rats are now walking at about a level of 12.5 and to the untrained eye you wouldn’t know anything was wrong with them. The next step is to humanize the antibody to this protein that inhibits regeneration. My understanding is that if all goes well that he will be ready for human trials within a year.
FF: Justin Dart, who I believe you met at the Paralympics, has just received the Presidential Medal of Freedom, and said the other day that, “The Disability Rights Movement has lacked a great communicator. If Christopher Reeve were to champion civil rights for people with disabilities, then he would have the opportunity to become the front-page advocate that our movement has lacked.” Do you think down the road that you could find yourself fighting for the rights of people who are blind or deaf or developmentally disabled – an altogether broader coalition of people with disabilities?
CR: Well, I don’t think that I would be able to be a spokesperson for people with all disabilities because it’s such a widely diverse group and there are so many attitudes that people have about disabilities. I was just saying a minute ago here that pretty much everyone who has AIDS would want to be cured, they would rather not have AIDS. In the Civil Rights Movement of the 1960s, everyone involved wanted equal and fair treatment so there was unity behind the movement. But, there are some people who have been in chairs for a very long time who say, “there is nothing wrong with me.” They don’t believe that a cure is possible and that it is a waste of time or maybe they are just in a mindset where they think research is irrelevant. So, it is very hard to represent the entire disability community. I am doing what I can, based on my own beliefs. I think that is all an individual can do. I am trying to share the effort on behalf of others. I am primarily concerned with diseases of the central nervous system and the brain. My focus is on cures. I think they’re possible. Just as possible as when Kennedy said in 1961, that by the end of the decade we’d put a man on the Moon. For me to take on the entire disability community would be impossible. No one individual can do it. But, I am certainly putting my efforts behind what I believe in and that’s the most truthful thing I can do.
FF: You alluded to the fact that some people with disabilities are happy to remain as they are—living perfectly productive lives. Others feel what they see is a pity approach of fundraising that can fuel negative stereotypes about disabilities. How do we go about promoting research without devaluing people with disabilities?
CR: I’m not sure. There is a problem that needs to be addressed and you know I think that the fight is reasonable. I look at the positive side of what can be accomplished.
FF: To able-bodied people, if you are quadriplegic and you’re alive, you are automatically courageous. If you can talk, you are an inspiration and if you actually do something, anything, you’re a saint. Are you ever tired of those labels?
CR: Well, I sometimes joke with my assistants and the nurses about getting a T-shirt that says, “I’m not your inspiration—get a life.” But, I don’t really mean that. It’s hard sometimes, with the way people gust. They mean well, and the main thing is that if I can do positive things that are helpful to others, then I’m not concerned with what they call me.
FF: I’ve been involved with the Democratic Party and I was impressed by your speech at the Democratic Convention. Do you think that down the road you might even consider running for office?
CR: Well, I’ve been asked that many times in the past. But no, I don’t think so. I think that the difficulty of raising money and having to deal with special interests groups and having to make too many compromises would really bother me, I’d rather be an advocate for something I really believe in than finesse the issues in order to stay in office. No, I think right now, most politicians have a hard time being true to themselves and true to their beliefs because they are fighting for their survival, and I wouldn’t want to be in that position.
FF: There are far too many of our brothers and sisters with disabilities who are stuck in nursing homes simply for a lack of help with the activities of daily living. There is a piece of legislation that would enable people with disabilities to get the personal assistance services that they need to live independently in their own community. I was wondering if you are family with this bill or support it?
CR: No, I hadn’t heard of that particular piece of legislation. I believe that if we can hasten the pace of research up with interventions, therapies and cures then it will get people up and out of difficult situations. This way, we won’t go broke just maintaining them on Medicare or parking them in nursing homes, where they receive minimal care. I take the long view, which is that these are problems that can be solved if the money flows. That is why I am trying to double the budget of the NIH [National Institutes of Health]. We should send a very strong message to Congress to help them realize that as America gets older that we are going to have more and more people with disabilities and we need to fix them, not just park them someplace.
FF: I know other people who have had disastrous experiences with the medical system and managed care. With your experience, what thought do you have about American health care policy?
CR: First of all, insurance caps should be raised. Insurance companies should be forced to pay out the benefits that the patient is entitled to. The problem is when you have the patient request something, the insurance company immediately denies and the reason they do that is only 30 percent of patients fight back. All of this while there are certain CEOs of insurance companies taking home $300 million a year in personal income. That is outrageous. We need to make insurance companies provide the benefits they are supposed to, and we shouldn’t have to fight for necessities, whether it’s a back-up ventilator or a shower chair or physical therapy. For example, I’m not allowed to have physical therapist do anything below the level of my shoulders because they say it is irrelevant.
FF: Perhaps the most controversial issue in the past few years in the disability community has been the work of Dr. Kevorkian. Where do you stand on issues of euthanasia?
CR: I think it is a matter of individual choice. I think people should have the freedom to make their own decisions. Personally speaking, if I were at a certain level—let’s say my brain stem would have been injured and I couldn’t move my face, swallow or talk—I would say that is below the line of acceptability. I think if somebody, after a great deal of thought and having exhausted all other options, wants to make that decision then they should have the freedom to do so. For all of us it is our life, and each of us has a different threshold as to what they can stand. I don’t think there is any benefit to keep people alive who are in horrible pain or suffering or a vegetative state. So, in theory, I am not opposed to it.
FF: I think what concerns most people with disabilities is, who makes the decision. I think you would agree that it is up to the individual. If doctors are deciding it for people, that is extremely distributing.
CR: Right. It has got to be the patient.
FF: Frequently, people who do make that choice haven’t had peer counseling or other support. It is important that people really get a chance to look at the options.
CR: Absolutely, and that is why I say that it would only be an absolute last resort.
FF: I was so moved by your interview a couple years ago when you told us about when you saw your wife for the first time after the accident. You said, “Maybe this isn’t worth it, and I should just check out,” and she was crying and said, “But you’re still you and I love you.” That just changed my life it was so beautiful.
CR: Yeah, that’s what happened and that’s actually the title of my book, Still Me, which comes from what she said to me.
FF: I think a lot of people right after the injury feel like they are half a person.
CR: Yeah, it’s hard to see after the injury. If you are lucky, before long, you find there are good reasons to carry on. And I think now we are out of the dark ages, in terms of the research. As little as five or seven years ago, people would have thought a cure for spinal cord injuries were impossible. In the mid-1980s, a cure for AIDS was thought impossible, because it takes time, commitment and money and grass roots effort to support it. There is virtually no problem that we can’t overcome. So, here we are, talking about regeneration trials in human beings, possibly by the end of 1998. That’s incredible. You don’t want to throw in the towel, because there’s always something amazing just over the horizon.
Who knows why an accident happens? The key is what do you do afterwards. There is a period of shock and then grieving with confusion and loss. After that, you have two choices. One is to stare out the window and gradually disintegrate. And the other is to mobilize and use all your resources, whatever they may be, to do something positive. That is the road I have taken. It comes naturally to me. I am a competitive person and right now I am competing against decay. I don’t want osteoporosis or muscle atrophy or depression to beat me.
(Fred and Chris says their good-byes.)
CC: What is the concept of your new book?
CR: Well, it’s more than just an autobiography. It’s the outline of my life story, but it also gets into politics of medicine, into research, and into insurance and various other issues.
CC: What prompted you to write it now?
CR: Back in late 1995, I was approached by a number of publishers and, at first, I resisted because I didn’t know what I would write about. In 1996, it became clear that a book could be helpful. I also need to make a living. I didn’t know what my future would be. You know my career as an actor is over. There was a time where I didn’t know if I’d be able to make the transition to directing. Writing a book was the first concrete job that I was offered, and I thought it would be a way to raise awareness. I don’t pull any punches in the book. I let people know what it’s like to live with a spinal cord injury. I think it’s something that most people know very little about.
CC: Will there be surprises in the book?
CR: I think it will be very informative. I think most people think you just end up sitting in a chair. They don’t understand all the physical issues of bowel, bladder and sexual function, skin breakdowns, osteoporosis, muscle atrophy, circulation problems and everything that can come up that I fight every day.
CC: Are you producing or directing at this time?
CR: My recent TV special I produced with Don Misher, who is really the premier producer of events in Hollywood. He did the Oscars, the Kennedy Center Honors, the Emmys and he ended up deferring a lot to me because me didn’t know much about spinal cord injuries. I helped him design the program. ABC wanted it to be about me and I said no, use my name but let’s tell a story of ordinary people, and that’s why we did the profile on Travis Roy and the story of the couple who got married and they are both in chairs. So, one is a very sad story of a man who at 18 had an injury, and the more uplifting story about this couple. I also wanted to have performers who had disabilities, like a comedian with cerebral palsy. I wanted to put him out there on primetime where people would feel uncomfortable and then just relax because he’s so funny. I was very happy that we were able to get that on the air.
CC: Do you have any other projects that you’re currently producing?
CR: No—not so much producing but directing. There are a couple of things that I am considering for the fall. They are movies… dramas.
CC: How do you travel now? I know you used to have a pilot’s license.
CR: I had a license for 20 years. We travel on private planes now. The issue with the airplanes is the room it takes for the oxygen tanks, because sometimes I need to be on oxygen when I’m traveling. The other problem is the seating. Even in first class, they don’t recline. For example, I couldn’t sit doubled over like I sometimes need to do. I have very sensitive skin and I’ve fought off one infection and I’m fighting off another now. The airline would actually compromise my condition. I’ve been fortunate so far in being able to take advantage or companies donating flights. There is always some nice CEO that will donate a flight, so I can go speak at the rehab center or whatever or to Jacksonville to the chapter on MC. So far, we haven’t been able to go commercial, but someday I hope to do that. But, I think it will be after I get off the ventilator.
CC: You used to work with a lot of environmental causes, is that sill the case?
CR: Well, a lot of my political activity before the accident revolved largely around environmental issues and campaign finance reform, the National Endowment for the Arts and a group I was involved with for many years, the Creative Coalition. We fought to get recycling started in New York. We worked to stop a huge coal burning power plant form being built near Albany. We worked to protect New York’s water. We managed to get the state to spend a billion dollars to buy land to protect the reservoirs. I worked on that issue for more than a year and a half with Robert Kennedy and John Cronin.
Those used to be the issues I was working on. Since the time of the injury, I have shifted my emphasis on issues of the disabled on a number of fronts. For example, I am working with Senator Rockefeller in trying to pass legislation that would raise the cap on insurance policies from one million dollars to ten million, because if you have a catastrophic situation, you can go through a million dollars in a few years. I am also working on trying to double the budget of the National Institutes of Health, so that the pace of research can pick up. Now, only 22 percent of grants applied are funded and that’s not enough. If they had more money, they could fund more research. We are on the cusp of some real breakthroughs. Consider what’s happened in AIDS research in the last 10 years. In 1984, the government spent no money on AIDS, now they spend $1.3 billion. As a result, the progress has been absolutely extraordinary. Per person, the NIH spends $1,100 per year on AIDS research, but they only spend $30 for research on Parkinson’s, but a cure for Parkinson’s, doctors say, could be accomplished with adequate funding. This would all carry over to spinal cord issues, as well. WE really need the NIH to lead the way. So, we’re working on that, and also on legislation that would require every insurance company to take one-penny of health premiums and give it to the NIH. That would raise $24 billion a year. The insurance companies think this is an unfair tax and they are not willing to let go of that one penny, and they say they’d have to pass the costs along to the consumer.
CC: Has anyone come up with a formula that would show how much they’d save by reducing the amount they spend on these health situations?
CR: Yes. But, only look at the short-term profits. We’ve told them that if they spend more on research, then they’ll have to pay out less in benefits. It’s been very, very difficult.
CC: How are things progressing at the Reeve-Irvine Center at the University of California Irvine?
CR: In my opinion, things have gone way too slowly. They should have named a direction and been up and running by now. I am disappointed in the amount of time it is taking. We asked the Dean of the Medical School to find the right person and get him or her in the building, but that hasn’t happened. This has been going on for almost three years now. I am frustrated by it.
CC: Beyond all this work you have told us about, how do you find time to have fun, and what do you most enjoy doing?
CR: Well, I get a great deal of pleasure out watching my younger son, Will, who is five, do his various activities from hockey to soccer to learning to ride his bike without training wheels. He has a great emotional effect on me. He is a source of pride and joy as well as amusement. Spending time with him is almost always an uplifting experience.
My wife and I go to the city to go to the theater, we go to our country place in Massachusetts. I don’t have the fun of competing with my horse or sailing, but we find other ways. As you know, this whole thing is about adaptability and finding pleasure in ways that you might not have thought possible before.
Recently, I went sailing in Rhode Island. It was actually blowing 35 [knots]. It was the tail end of hurricane Bertha. I went out in one of the 12 meters, and old one from the 1930s. We went out and raced and had a good time. But, I have to say that just to be out on the water and to be in a boat is so frustrating for me. I’ve been a sailor all my life, and to not run the boat and be the captain—to just be there sitting strapped in—is actually more depressing then uplifting. Maybe someday that will change, but I’ve found it difficult emotionally, ‘cause I’ve never been cargo or baggage before. Since my earliest days on the Jersey shore, I was on the match racing team for my yachting club. You know, I’ve sailed in all kinds of boats. They have been a huge part of my life. At night I dream about sailing.
CC: Really. What are you like in your dreams?
CR: In three years, I’ve never had a dream where I’m in a wheelchair. In the mornings, when I wake up, it always takes a while to adjust, and then I remember I can’t move my arms or I can’t move my legs. It sometimes takes five or ten minutes to come back to reality. In my dreams, I do all the things I used to do. I’ll be sailing or riding or traveling or acting on stage. My mind is hanging on to the memories of when I was upright.
It’s left me in a position to where I hold on to a realistic hope, not just based on optimism, but on hard data from scientists. They have been upfront and honest about what is coming, and what is possible. Now that regeneration is possible, and the antibody to the protein has been discovered, it just needs to be humanized. I do regard this realistically as a temporary situation, and that is reaffirmed in my mind and in my dreams.
I am a competitive person and right now, I am competing against decay.
check this out
Christhoper Reeve interview on the set of the Practice
