AN EVENING WITH CHRISTOPHER REEVE

Christopher Reeve:

What a welcome. Thank you so much. It's a real privilege for me to be here. Of course it's a real privilege to be anywhere and I'm sure many of you have had that experience. But it seems to me that this past century has accomplished two Civil Rights movements. First, the right for blacks and Hispanics and people from all different nationalities to take their place in the middle of society and that has been achieved at great cost. It is a tremendous struggle in America, but now we think nothing of walking into an office and finding that a black person is the president of the company instead of a janitor cleaning the hallways. And then we learned that the talent that blacks and Hispanics have, always had, their intelligence, dedication and willingness to work is no less than anybody else. They have been able to persevere and finally I think we have really overcome tremendous amounts of prejudice, not only in the United States, but throughout the world.

The second great Civil Rights movement was equality for women. It started at the end of the last century. Women finally got to vote. We've gotten all the way to the point now where women aren't expected to stay home and just be mothers and it's okay to be a single parent and it's okay to go out and pursue your ambition and your dreams. And that's been a very important breakthrough because there are so many areas where women are more talented and have more to offer than men do.

And now we are beginning to see everybody working side by side in society and in the workplace. But, there remains one HUGE minority that is still terribly discriminated against. And that population is the disabled population. And that comprises 1/5 of the world's population. In the United States, for example, we have 54 million disabled people and the thing that's very difficult is when blacks and Hispanics and women were fighting for equal rights there was a level of discomfort. But nothing approaching what happens when "normal" people look at the disabled and are uncomfortable. That is a prejudice that they MUST overcome because we're not in a position to always look our very best or to feel our very best, or to be pleasing to the eye because we have suffered terrible debilitating diseases and injuries. But what's happening now is the kind of discrimination that is so bad and I want to tell you that it exceeds any prejudice that ever occurred before in the previous civil rights movements.

And I am going to give you one true example which I think summarizes the problem. Near my home in New York, there is a woman who is on a ventilator. Now completely dependent as I am, and requiring 24 hour a day nursing, and she lives alone, and an agency would send nurses over. That's a very difficult thing because sometimes a nurse arrives from an agency and all she knows is the name and address of the patient, nothing about the condition or what to do. But in this particular case, the nurse came from the agency and the woman went to sleep at about 2 or 3 in the morning, the nurse downstairs it turns out was someone with a drinking problem, and brought liquor with her and drank and fell asleep.

The patient had a disconnection of her breathing hose and made frantic sounds of clicking for help and of course the siren on the ventilator was wailing away. All of this right next to the monitor. But the woman, the nurse downstairs had passed out and was oblivious to this, slept right through it and the patient, the woman suffocated and died. The defence in the law suit, the lawyers and sometimes I wonder how these people sleep at night. The defence was going to be that her life had so little value that it really wasn't worth anything and there shouldn't be much of a settlement. When I heard about this I offered to testify and they settled out of court that same day. Now, when we live in a society where ever a lawyer, and you know the joke about lawyers is that, what's different between a lawyer and a catfish? One is a bottom-dwelling scum sucker and the other one is a fish!!! But, of course there are terrific lawyers but sometimes the doctrine of presenting the best possible defence makes a lawyer do unconscionable things on behalf of their client.

But, when we live in a society when something like that can still happen we are still back in the ages when blacks had to go to the back of the bus. When there were separate facilities for blacks and whites. When a woman couldn't possibly hold out the hope of running a movie studio, we were still back in the dark ages. And what is really discouraging is that science is making tremendous progress and there are new ways to modify buildings and houses to bring them up to compliance with the Americans with Disabilities Act, which was passed back in 1991 or 1990, and when those things can be done, but aren't. There are still so many places in the United States and I'm sure you find it true here in Canada too, where we ought to be able to get into a door, where we ought to be able to get into a restaurant, we ought to be able to get into a facility and we still can't. There is still discrimination because it costs the owner of the building, it costs him money to make the modifications. Then they figure there's not that many disabled people, why should I spend the money?

We are still suffering from the prejudice. And that has got to change. The other thing that's got to change is the way that we look at the future of people with disabilities because, just to take people with spinal cord injuries as an example, the United States government spends $9 billion/yr just meeting Medical and Medicare payments to people who suffer from spinal cord injuries and keeping them in nursing homes (which are like human parking garages, where there is no therapy and where it is virtually impossible to maintain a positive attitude about the future). That's nine billion dollars just to park people without doing anything for them. Well, the fact of the matter is, if we were to spend more money on research, when money is spent what happens is the young scientists are attracted to the subject because they can make a living doing the research. There is a future for them.

In 1984 the US government spent no money on AIDS, no money at all on AIDS research. And nine years later, they spend $10 billion annually. And the reason for that was because the social stigma of AIDS was removed. At first there was a prejudice against the gay population and many lawmakers had a really horrific attitude of prejudice, that well, they get what they deserve. It's a plague on a minority. Well then children started dying of AIDS, women started dying of AIDS, it happened all across the country. And if you remember there was a quilt with all the names of those who had died, that made its way across the country, then was spread out on the mall in front of the capital in Washington and now with that grass roots movement, the politicians had to respond. It was now politically safe for them to respond and they allocated money and sufficient money to bring in all kinds of new investigators and the result is they now have protocols at the National Institute of Health that are prolonging lives. And I know one individual who in 1985 was at death's door and today, thanks to the protocols at the NIH, the virus is virtually undetectable in his bloodstream and he's never been healthier in his life.

Now the problem is that was a national symbol, something visible, very dramatic, but those of us who suffer from spinal cord injuries, who suffer from ALS, or suffer from Parkinson's or MS, who have had terrible strokes, we can't march on Washington. We can't organize the same way because it is simply too physically demanding to do. And so what we have to do is get the message out to our political leaders, that in spite of the fact that there is no quilt and there's no big rallies that are going to be staged, that for economic as well as humanitarian reasons they must address this issue and what's happening now is that Americans are living longer. Canadians are living longer. The life expectancy in the next 20 years is going from 76 to 96. That's a long life, but what will be the quality of that life? And if we don't spend the money to bring in the researchers, bring in the scientists, that quality of life will be poor for those of us suffering from disability.

Now fortunately, even a couple of years before my injury, we were in the dark ages about spinal cord and the common wisdom was that the cord could not regenerate. But I want to say that one of the great heros and really the father of regeneration is a distinguished Canadian who will go down in history as the father of spinal cord recovery. And that is Professor Alberto Aguierro at McGill University. He is the one who discovered that there are two protein molecules at the base of the brain stem. The positive function of these molecules is to stop the brain from overdeveloping during gestation. But then in the adult these protein molecules perform a negative function, they stop the regeneration of nerves in the spinal cord. Now you can chop off your hand then a surgeon can sew it back on again and you can go out and throw a baseball, because of the plasticity and ease with which the peripheral nervous system is able to make appropriate connections. And the good news now for us is that they have discovered nerves regenerate in the spinal cord they seek to find appropriate connections across the injury, across the lesion. And when these appropriate connections are made there will be improvement in sensation and in motor function and depending on the severity of the injury, there are endless possibilities to how much recovery can occur. If someone has been very damaged there may be limitations, if someone is less damaged there may be a better outcome.

But the point is, through regeneration the use of human embryonic cells, the use of gene therapy, the spinal cord can and will regenerate and so it is only a question of time before these techniques make their way into humans. One of the most exciting discoveries was made by a Dr. Viscovi in Milan who found that there are cells called epitomal cells which were thought to only exist in again, in the child during gestation, because these cells are undifferentiated and they can become anything.

Well, very recently, just two months ago these cells were found to exist in the adult in the ventricles of the brain, in the spinal cord and even in the skin. And this is tremendously exciting because the hope, the best hope for recovery now, is to biopsy these cells from your skin, from your hand for example, they could grow hundreds of thousands of cells in a petri dish and genetically instruct them to become neurons and axons. They would then be injected inside of the injury and they would become the nerves necessary to carry messages from the brain to the rest of the body.

Now that would have been science fiction a few years ago, but it's here and it's happening and it doesn't matter whether it's an acute injury or a chronic injury. So I offer you the specific detail, not to give you a boring science lecture but to tell you there is very real tangible hope, very real hope...And one of the great advantages of this technique is that there is no danger of toxicity to the body or rejection by the immune system. And what I love about it is the body is healing itself. Taking cells from one part and using them in another area and I think that's somehow a beautiful design, rather than loading up the body with more chemicals and more drugs and more artificial agents.

So in the meantime one of the things I think we need to do is in two parts and that is something that has been very hard for me to learn but I call it acceptance and denial and in a weird way they work together. I've been injured for four years which is nothing compared to many of you and you have my utmost respect for what you've endured. The point is that, if you don't accept that for some reason you're in a wheelchair or you have some disability, life is a horrendous struggle and it's perfectly okay to say well right now I am paralysed from the chest down, there's a lot of things I can't do. There's a lot of things I miss, but so what, I'm not going to mope about it.

That I think is one of the most important things that we have to work on. We have to keep our state of mind positive and accept ourselves the way we are. There is nothing wrong with us. There is nothing wrong with being disabled and society must learn to get rid of its prejudice, the same way...the same way they had to learn to deal with minorities and women, to remove the stigma and say disabled people are actually more able than many supposedly able people. As a matter of fact, studies have shown that if a company hires a disabled individual and puts them in the middle of the workforce in the company, everybody else has to strive to catch up because the disabled person works harder. We are motivators of other people.

Even in my own life and I am really very privileged, I know when I direct a film I don't hear any complaints from anybody because they take a look and say well what do I care about the size of my dressing room compared to the size of what Chris Reeve has to go through. They just relax about it. And they project, they look and they say what am I moaning about when in an instant I can be in the same kind of wheelchair he is in. That's real progress when it's not us vs. them. We are all in this global village of 6 billion people, we are all family. When I was on my feet, I chose my friends and I did not go out of my way to make friends with someone who was disabled. No I didn't because I was uncomfortable, I admit it. In fact when I trained for a film in which I had to play a paraplegic, I went to a rehab centre in California and studied a woman who had a bookcase fall on her head during an earthquake, and she still had the halo on her head and she was just learning to walk again and I found it incredibly uncomfortable. I didn't know what to say. I didn't know how to be with her. I was very, very awkward and I just kept quiet and every time I'd finish a session with her she was cool, she was great. Told me about everything she goes through but I'd get in my car and I'd drive away and smugly think to myself thank God that's not me. I deeply regret thinking those words because as we all look out at each other, anyone of us, anyone of us, it could be me. Once people understand that and they are beginning to more, then you get the beginning of compassion.

When people project and understand that in an instant and as they grow older they face Parkinson's, Alzheimer's, MS, strokes, all the diseases of the brain and central nervous system, which will effect the entire population as we get older. People begin to realize hey I'm lucky, I'm just temporarily not disabled. So, the point is we're beginning to see equality, we're beginning to see new opportunities and that brings me to the other part we've already talked about, acceptance and the other part is denial. And what I mean by that, and everybody has to work it out for themselves, my point of view may not be your point of view, so please hold onto your belief and let me hold onto my belief. But my belief is that there is nothing we can't accomplish if we set our minds to it.

In 1940 FDR created the National Institute of Health and charged them with mission of curing polio. Nine years later it was accomplished. Today any child can get a polio vaccine and will not get polio in their lifetime. When Kennedy said we're going to go to the moon by the end of the decade, the technology to do so had not been invented. But because his vision was so strong and his leadership was so captivating the whole country, the public and the private sector, it took 400,000 people to do it but by July of 1969 Neil Armstrong walked on the moon.

Now if we say that people who have disabilities who want a better life, who want to get out of wheelchairs, who want to be able to walk, who want to put their arms around their loved ones, who want to be able to go back to things they love doing, then that mission, if we get behind it, can't be stopped. And with enough money and enough commitment and enough support, which is already growing around the world, there will be a vaccine for diabetes, there will be a vaccine for AIDS, it will be possible to stop the demyelinization of nerves that causes the disintegration of the body in MS. It will be possible to regenerate the spinal cord.

All of these things are within our grasp. We simply have to decide whether or not we are going to make the commitment and do it. And I think that with the energy and the leadership that you show here and that is prevalent all over the country. This last great civil rights movement of inclusion and recovery and allowing us to lead the lives that we wish to live and are entitled to live, I think this civil rights movement can and will be accomplished.

Thank you very much.