ABILITY had a chance to speak with Christopher Reeve on the set of the TV show The Practice.
Chet Cooper: Over the past few years, you have been progressively making the transition to disability advocate. How does participating in an episode of The Practice correlate with your goals?
Christopher Reeve: My overall aim as a disability advocate is to reach out in various ways whether that means promoting legislation in Washington, working with the media or conducting interviews to reach a wider audience. Within the framework of a TV drama, which of course has to have twists and turns in the plot, you can subtlety introduce these issues.
CC: What prompted you to choose The Practice?
CR: I thought that it was the most logical show because it’s very contained; it mostly takes place in the courtroom, the witness room and the judge’s chambers. The audience is forced to focus on the words. I’ve also been following the show for a while and I think they do good job. I wrote a story treatment and gave it to David Kelley and he called and said he liked it very much.
CC: Will you be credited as a co-writer of the episode?
CR: No, I collaborated with David Kelley on writing the story. Then he wrote the teleplay based on the story that the two of us came up with.
CC: Briefly describe the story line of this episode and the role you will be playing as an actor.
CR: In this episode, I have a very wealthy older brother whose 16 year-old son, Justin, was in the car with me practicing for his driver’s test. We got into an accident and he was killed and I became a quadriplegic. My brother, Derek, has never forgiven me for that—he thinks it is my responsibility and my fault. After being estranged for a year Derek has been killed and my wife is on trial and that’s where the episode begins. My wife admits that she killed him but is pleading temporary insanity due to “caregiver burnout;” she’s been depressed, she’s been having blackouts, completely blanking out on what happened during an entire day. There is a record of phone calls, emails and meetings where she had begged Derek for money and he refused to help. The issue is whether the jury is going to recognize caregiver burnout as a legitimate medical condition, something that would warrant a release on temporary insanity. I am trying my hardest to support her in this.
CC: What exactly is caregiver burnout and how are you addressing the issue?
CR: In this episode, my wife, played by Carolyn McCormick, is handling my case by herself. That means dressing, feeding, cleaning up…it takes over her life. People who are put in that position often end up feeling very depressed and hopeless. Worst case scenario: Caregiver burnout usually happens when people living with disabilities reach the limit on the lifetime cap of their health insurance policy—which is usually a million dollars. While it sounds like a lot, if you have a severe disability you can run through that amount in only a few years. After that you may have to sell your house or borrow from relatives…anything to raise enough money. Ultimately it comes back to the relatives or the caregivers and that can become a tremendous strain on them.
I’m trying to demonstrate to insurance companies that it would actually be profitable to provide proactive care, therapy and service for people with disabilities.
CC: How do you convince the insurance companies there’s a benefit?
CR: If the insurance companies can pay for a treadmill, for example, to be installed in private homes it’s not a large investment and there are many benefits. People who have control of their upper body often walk again in a couple of months. Virtually all of them are able to walk on their own—using a cane. They’re not cured, but they are rehabilitated. They’re out of their wheelchairs.
I’ve had the opportunity to exercise since October 1995. The benefit is my muscles have not atrophied. Pulmonary condition and osteoporosis are huge issues which cost insurance companies a lot of money when patients need treatment or hospitalization. I haven’t—knock on wood—needed to be hospitalized in more than five years.
CC: When we last met you had a pretty serious decubitus.
CR: I’m doing much better. In fact, I was able to withstand a 13 hour flight from Los Angeles to Sydney. I don’t need to be turned at night and I can sit up in the chair for longer…all that is important.
CC: Your recovery has actually made unprecedented progress in some areas.
CR: In September 2000 when I found I was able to move my index finger on my left hand they began a study conducted by Dr. John McDonald of Washington University in St. Louis. Results from the study were made public last September both in the Journal of Neurosurgery and in the Proceedings of the Academy of Science. It showed that I have been reclassified from ASIA A all the way down to ASIA C and that I have some sensation now on approximately 70% of my body.
In regards to the functional recovery of my legs and arms…most of the movement I can do can’t be done in a chair because of gravity. By lying in bed or floating in a pool you take the gravity away and gain quite a lot of movement back. I’ve been fortunate to have the best possible care but this care and the equipment should be made affordable to everyone. For example, an FES Exercise Bicycle right now costs about $15,000.00 retail. I know a manufacturer who says they can be made for $1,500.00. It is just going to be a combination of small companies who are willing to manufacture equipment for a lower price…but they will only be able to do it if they get the support of healthcare plans, insurance companies and rehab centers. I really think that if the whole community works together and doesn’t look at each other as adversaries, we could absolutely revolutionize rehabilitation.
CC: How has the Christopher Reeve Paralysis Foundation changed over the past few years and what significant achievements has it experienced?
CR: The foundation originated as the American Paralysis Association by Henry Stifel of Springfield, New Jersey. Mr. Stifel founded it in 1982 after his son, at the age of 17, was in a car accident which resulted in a spinal cord injury. The foundation had a few people working and was able to raise a modest amount of money. It grew over the years and in its course developed relationships with the best scientists in the world.
I came on board in 1996 and the name was changed to The Christopher Reeve Paralysis Foundation in 1999. Since that time we have quadrupled the money raised for our research and quality of life programs. And now there is also the Christopher and Dana Reeve Paralysis Resource Center — just down the road from our main office in Springfield. It’s funded through a cooperative agreement with the Centers for Disease Control and Prevention. The first of its kind, the Paralysis Resource Center is a clearing house of information for people who are newly injured or people who have been living with paralysis for more than a couple of years. There they can find referrals to whatever they need.
CC: Even before the merger though, you were already branching into quality of life issues.
CR: I was. In 1997 I became the Vice Chairman of the National Organization of Disability, which fights for accessibility, job opportunities and recognition of the rights of people with disabilities. I wear two hats as they are both equally important.
CC: A few years back, you and I talked about the manner in which people were automatically elevating you to a spokesperson for disability. At that time you were going through a transition in your life, and probably a little more focused on finding a cure than advocating for quality of life issues. How would you say things have changed?
CR: Right…I think perhaps it is understandable when you are newly injured that you think life’s not worth living. Once you get past that phase—hopefully with the help of family, friends and professionals—then you move on to asking, “What kind of a life can I build?” Then you become quite interested in the state of research: Is there something out there? Is there a chance to get out of this situation? I’ve generally found depending on how long people have been injured, their state of mind there differs. Some people don’t even want to hear about a cure, don’t even want to think about it. Some people even say, “Well if you invent a cure are you suggesting there is something wrong with having this disability?” And I say, “Well, if there was a cure available tomorrow, which would enable me, or anybody else to get up and walk again my vote would be, ‘Yes please.’” If someone else were to vote, “No, I like myself the way I am,” it’s a free country but I think that it is about choices. We should not conceal the possibility of being able to change the situation and to be able to recover function. I can’t see why that is unreasonable. What if we had never bothered to try to cure tuberculosis, polio, smallpox, the flu… what if we were still using the surgical techniques from the 19th century? What if we were not able to do heart transplants…it doesn’t make any sense.
CC: You obviously feel strongly about this now.
CR: When you put yourself in a position of leadership or advocacy, when you take a point of view then you have to be able to be strong. You have to say, “This is our goal, this is what we are trying to do…we want scientists to conduct practical research that will lead to human trials that will lead to therapy.” You can’t do that half-heartedly so yes, I am very aggressive about it, particularly because money is tight. We want to get the most out of every research dollar that we can. And yes, we are at the point now where we are pushing the scientists. We want them to go faster, we want them to feel a sense of urgency, we want them to think about the millions of people and consider that they themselves, or their loved ones, could suddenly suffer a debilitating injury or come down with an incurable disease. Would that make them feel any differently?
CC: Do you find the same works within the realm of politics?
CR: I’ve found working politically that the officials who get it are those that have a personal or emotional connection to the issue. For example: Nancy Reagan. Now that her husband doesn’t even recognize her, now that it hurts, she’s speaking out. My question is, “Why couldn’t she have spoken out before?” I think back to the question of whether or not the Federal government would fund AIDS research and remember President Reagan was against it. In fact, he implied that AIDS was God’s revenge against people who lived certain lifestyles. Today women and children, thousands and hundreds of thousands of people are dying not only here but world-wide. Now the federal budget for AIDS research is 1.8 billion —in the early 1980s, it was zero. Why did it take so long? Because the climate has been changed. And the people have demanded it and I think we can learn a lesson from that. I do believe that people have the power.
CC: Do you foresee the same wave of acceptance happening for stem cell research as eventually happened with funding for AIDS and HIV research?
I feel particularly because stem cells hold such promise to cure so many diseases that there is a basis for a new grass-roots movement. I also think the federal government is going to remain deadlocked because of social and religious conservatives. What we are doing now is moving on to the state initiatives to pass the legislation that should be passed by the federal government. California was the first to pass the bill last September which allows scientists there to conduct research on stem cells derived from any source. Similar initiatives are also under way in New Jersey, New York, Massachusetts, Ohio and Wisconsin. I feel that because it’s the right thing to do, because there is very strong popular support, because it is a major opportunity for the research community as well as the pharmaceutical industry, I think that legislation will pass that the federal government won’t be able to overturn. Scientists in England are allowed to do all kinds of stem cell research and they are funded by the government to the tune of 40 million pounds which is about $75 million. Other countries such as Israel, Sweden, Finland, Switzerland, China and Singapore are also doing cutting edge stem cell research.
CC: Are you able to work with them at all?
CR: Yes actually. I am in touch with a scientist that used to be at the University of California San Francisco, Roger Pederson. He left a few years ago because of the restrictions in the United States and is now heading the stem cell team over at Cambridge in the UK.
CC: I saw a documentary about your recovery.
CR: It’s called Courageous Steps and was made by my son Matthew.
CC: Any other projects you have been working on?
CR: I’m trying to do three things at once. I’ve enjoyed my path as an actor—but I’m also trying to get the message out for our foundation and specifically for people living with disabilities.