The MacNeil/Lehrer Report; Annual National Telethon to Raise Money for the Muscular Dystrophy Association

JIM LEHRER: Good evening. Sunday night, comedian Jerry Lewis will be doing what he has been doing every Labor Day weekend for 16 years -- hosting a national telethon to raise money for the Muscular Dystrophy Association. It has become as much a part of the Labor Day tradition as picnics with politicians, a tradition that this year, for the first time, has been called into question. A coalition of disability rights groups say the telethon harms the interests of all disabled people by perpetuating the stereotype of the disabled as helpless, dependent people who need pity. It`s a charge stoutly denied by Lewis and the Muscular Dystrophy Association. We hear both sides of that argument tonight, as well as the wider one also in progress over the general responsibilities of other health charities such as the American Cancer Society. Robert MacNeil is off; Charlayne Hunter-Gault is in New York. Charlayne?

CHARLAYNE HUNTER-GAULT: Jim, the Muscular Dystrophy Association is basically involved with research and patient care for people with muscular dystrophy or some 40 other neuromuscular diseases. Last year Jerry Lewis, who is national chairman of the Association, raised $31 million in pledges from 93 million viewers. In a recent interview on the The Donahue Show, Mr. Lewis defended himself and the Association against the attacks on their program.

JERRY LEWIS: And if you watch very closely, you`ll find that we never, ever exploit my kids in any way. We let the people know that a child has been given a dirty deal, not pity. We do not pity them. For that matter, I can introduce you to many, many of my kids who hold a greater pity for us that we cannot deal with their problem, and that they`re handling it okay. Many of them will say to you, "I`m not crippled; I`m inconvenienced." And that`s courageous, that`s stunning, that`s exquisite, as far as I`m concerned. The people you`re talking about -- the coalition -- I have great empathy for them, and they don`t want pity, as you or I would not like to have pity. But they are taking a position in such a generic sense. They don`t have a telethon that relates to what they are talking about. They don`t have the position that my kids have on Labor Day. They`re very special, very meaningful to the hearts and minds of everyone in this country, and they`re making waves. Because they are disabled doesn`t make them any less devious, my friend. And because you`re disabled, that has nothing to do with morality, principle or integrity.

LEHRER: One of the groups making the waves is the Disability Rights Center, a Washington-based lobbying group formed in 1976. It`s director is Evan Kemp, an attorney who has had a rare neuromuscular disease since childhood. It is one of the 40 diseases dealt , with by the Muscular Dystrophy Association. His mother was a founder of the Association in the Cleveland area, and organized the first telethon there. Specifically, what is done on the telethon that causes harm to disabled people, Mr. Kemp?

EVAN KEMP: Well, I think it`s the emphasis on children. The innocence of Jerry`s kids makes them an ideal vehicle for the pity appeal to raise funds for the telethon. But I think by celebrating children and ignoring disabled adults it seems to say to the American public that the only socially acceptable status for disabled persons is childhood. A disabled child is appealing and huggable; an adolescent, an adult or a senior citizen who is disabled is a cripple to be avoided. I think there is also too much stress on what I call the worst-case scenario. I think the public tends to think of handicapped and think of hopelessness at the same time. By stressing the worst case, it makes people afraid of disabled people. And I think this builds walls of suspicion and fear between the able-bodied and the disabled. I think there is too much emphasis on a cure. A cure -- when you think of a cure, you`re thinking of sick people, and sick people are to be taken care of and not become contributing members of society.

LEHRER: You mean when Lewis makes his appeal for money, he`s talking, "Send the money in so we can find a cure to muscular dystrophy." You think that`s wrong?

Mr. KEMP: I do. I mean, I think so much stress on it -- I mean, sure. I`d like to see cures. But I also think that the children with neuromuscular diseases have to adjust to a disability. And Dr. Kubler-Ross talks about the five steps that disabled people take when they`re adjusting to their disability. So much stress on a cure, I think, complicates and lengthens this procedure. She talks about denial, then rage, anger and depression, and finally acceptance. And when a disabled person is able to accept his disability, it`s a wonderful experience. I think it brings an appreciation of life, of freedom, and a joy and tolerance that few people, who have never had a life-threatening disease, will ever understand or appreciate.

LEHRER: Is the harm you see, then, primarily an image one-Mr. KEMP: Yes, it is.

LEHRER: -- that the telethon projects to to the rest of society about disabled people?

Mr. KEMP: Yes. I think too many people think we`re children, and too many people consider us eternal children. And as eternal children --

LEHRER: No matter what your age?

Mr. KEMP: Yes. And they want to segregate us and treat us in a paternalistic way.

LEHRER: What would you like done, Mr. Kemp? Do you want the telethon eliminated, or do you want Jerry Lewis and the Muscular Dystrophy Association to just do it differently?

Mr. KEMP: I`d like to see it done differently. I`d like to see a reform of the telethon. I don`t think it should be done away with. I think that they should present the total picture of a disabled person -- muscular dystrophy patients going to school, going to college; neuromuscular patients getting jobs and being contributing members of society; and really being integrated and having the joys and heartbreaks that we all have in our society today.

LEHRER: What do you say to Jerry Lewis` statement, on that tape, to Donahue that what folks like you who are complaining really want is your own telethon?

Mr. KEMP: No. Our group is a very small group. We`re an advocacy group. We don`t require much money. But I think what Jerry Lewis has got to realize is that he`s a part of the disability movement; that people with neuromuscular diseases are disabled, and that a lot of the things he does hurt people with neuromuscular diseases and other disabilities in getting jobs, and becoming integrated in our society.

LEHRER: Thank you. Charlayne?

HONTER-GAULT: Here to respond to some of the criticism we just heard, and provide some additional information, is a member of the board of directors of the Muscular Dystrophy Association. He is Robert Sampson, a telethon participant for the past 10 years. Mr. Sampson, who also suffers from muscular dystrophy, is a vice-president at United Airlines. Mr. Sampson, is the telethon a pity appeal that does more harm than good, in effect?

ROBERT SAMPSON: No, I absolutely disagree with that premise, Charlayne. And taking the points -- I grew up in the Depression years before the existence of the Muscular Dystrophy Association. And it isn`t totally oriented towards cure today. It is patient care and research. And the patient care is a very important thing, Charlayne, because we`re not dealing with a static disease like paraplegia or infantile paralysis. We`re dealing with a disease that is very degenerative. And the bulk of the one and a half million diseases -- that our total population covered by the Association -- the bulk of that relates to the childhood Duchenne dystrophy, which is very, very destructive. And that`s what I had. And without a muscular dystrophy association, the children just gave up. They felt nobody was fighting to do anything for them. It was bankrupting parents. In my own case. I know exactly what my parents went through. They lost everything trying to find a cure for my disease. I have also been an advocate for the handicapped, and continue to be -- actually for many more years than I`ve been on this telethon.

HUNTER-GAULT: Well, let me ask you. Just in terms of the telethon, what kind of image do you and the people who are running the telethon try to project and promote?

Mr. SAMPSON: We try to show that a muscular dystrophy child today is living longer, longer than they did in the years when I grew up with the disease without the research programs underway. We`re showing that we`re mainstreaming these children. We`re putting them back into the society. And on the telethon we show a great deal of adults in life. I think if we portray the disabled muscular dystrophy victim as being helpless, why do they put a Bob Sampson, or many of the other adults who are actively engaged in daily life in the mainstream of society?

HUNTER-GAULT: So you don`t agree that there is too much emphasis on the worst case?

Mr. SAMPSON: No. The worst-case is something we`re very concerned with. Duchenne dystrophy. And it`s a childhood disease, and you have to portray it.

HUNTER-GAULT: What about Mr. Kemp`s charge that you`re pursuing research at the expense of more fundamental problems like employment discrimination?

Mr. SAMPSON: I disagree with that. I`m vice chairman of the President`s Committee on Employment of the Handicapped, and I`m always there to testify. And I have a problem getting the support of other organizations, for the disabled to join me in the support of some of the programs at the federal level. I think that we do a great deal by role models that we portray to the general handicapped population in our country as to what can be done with a serious disability with your life.

HUNTER-GAULT: What do you think about what Jerry Lewis said a few moments ago on the tape that critics of the telethon are a small minority who are really just envious that they don`t have their own telethon?

Mr. SAMPSON: I don`t think they`re envious. I think they sincerely care about their position. But like all statements, it`s a general statement attacking something. The largest bulk of the disabled in our country, Charlayne, are the elderly today. They comprise over 25 percent of our disabled population. And I think they need attention and they need help. And I`ve been working actively in that area, too, for legislation to help them. They paid for this country. And I believe strongly that we can demonstrate in the Muscular Dystrophy Association example that no matter how serious your handicap is, you can be a productive member of society.

HUNTER-GAULT: All right, thank you. Jim?

LEHRER: Mr. Kemp, I`m confused. It sounds to me like you and Mr. Sampson are talking about two entirely different telethons. All the objections that you raised Mr. Sampson says that`s exactly what they do on the telethon now.

Mr. KEMP: Well, I think that all the ads that I see at 7-11 and McDonalds, the ads I see on the Metro bus and in the papers have Jerry Lewis and his children. I do think that there`s just too much emphasis.

LEHRER: Why is there so much emphasis on the children. Mr. Sampson?

Mr. SAMPSON: Because the bulk of the neuromuscular diseases covered by the Association are the children, and that`s the degenerative disease. Duchenne dystrophy. And very few people understand that in life today.

LEHRER: You don`t think that it projects all muscular dystrophy people as being children -- should be treated as children -- as Mr. Kemp says?

Mr. SAMPSON: I can count six adults that are on that show every year. Productive. And I`d like to include myself as productive. I`ve been in a wheelchair since I`m nine years old. and if it`s the intent -- direct or indirect -- of that telethon to portray someone as helpless, I don`t think they should have me there.

LEHRER: Mr. Kemp?

Mr. KEMP: No. When I was growing up I had quite a few role models of people with neuromuscular diseases doing quite well. And right now I think there`s only one role model for people, and that`s Bob Sampson. And I think that`s a shame. And I think --

LEHRER: But Bob Sampson is on the telethon.

Mr. KEMP: He is on the telethon. And I`ve never had any objections to Bob`s appearance on the telethon. I think he does a terrific job. And I think that there should be more people. I think there should be women that are talking, and can be role models for people -- women -- that have neuromuscular diseases. And I think that there should be more role models. We have fewer of them than we did when I was growing up, and that`s a great shame.

LEHRER: Is the telethon going to make any adjustments in what they do as a result of the criticism that Mr. Kemp and others have raised this year. Mr. Sampson?

Mr. SAMPSON: I would say to that. Mr. Lehrer, that every year we try to improve what we do. We try to improve the quality of the show. And I would only suggest to let the public be the judge of what we do. And we have gone over every segment of our show -- the taped sections and our interviews -- in the past, and will continue to do that in the future. Mr. Lewis came to me 10 years ago after I`d been an activist for the disabled for over 25 years in this country and he said distinctly, "I cannot exploit a child. I cannot expect a child to get up on television and explain to the American people what Duchenne dystrophy is. There aren`t many people who could do this, and I need your help."

LEHRER: Mr. Kemp, do you have the feeling that Mr. Sampson and Jerry Lewis and the Society are taking the questions that you`re raising seriously?

Mr. KEMP: I hope so. I think it`s the most noncontroversial controversy I`ve ever been involved in. I think most people in the country seem to be supporting the idea that the telethon should be reformed. And I think even people in the Muscular Dystrophy Association feel that way. And I think there will be changes this year, and I hope to see a whole lot of changes in 1982.

LEHRER: I was struck, though, by something, also, that Jerry Lewis said at the end of that piece that we ran -- that disabled people can also be devious, and being disabled has nothing to do with morality, principles and integrity. Is he talking about Evan Kemp and the others who are criticizing this telethon, Mr. Sampson?

Mr. SAMPSON: I`ll let Evan answer that.

LEHRER: Do you think he`s talking about you?

Mr. KEMP: No. I`ve always felt that Jerry Lewis was the type of person that feels very at home with disabled people. I don`t think he treats them as children, and I don`t think he treats them as people 20 feet high. And we do have devious people, and we have bad people and good people. And that`s one of the things that we`re trying to get across. We`re not all children. We`re not all good. We`re just like everybody else.

LEHRER: But you didn`t -- excuse me. You didn`t take his comments personally?

Mr. KEMP: No. And I think it`s a very healthy attitude that he has. I`d like to meet with Jerry Lewis someday.

LEHRER: Have you ever tried to?

Mr. KEMP: I`ve written to him on occasion, but we`ve never met.

LEHRER: I see. All right, thank you.

Mr. SAMPSON: I will arrange a meeting for you.

LEHRER: All right, thank you. Charlayne?

HUNTER-GAULT: The debate over the telethon and its effects is part of a larger issue involving the responsibilities of charitable organizations beyond fundraising and research. Among those raising that issue is Richard Pollack, who heads the health charity reform project at the Center for Science in the Public Interest. They are looking into four major charities including the American Cancer Society. Mr. Pollack, in general, what should charitable organizations be doing that they aren`t doing now?

RICHARD POLLACK: Charlayne, over $3 billion of the public`s money is given each year to major public charities who purport to work in certain diseases, and to do everything they can to cope with these different diseases. The fact of the matter is, there`s a good deal of work in the research area, and some in the service area, but when it comes to public ?policy issues -- burning issues -- involving the diet, involving environmental chemicals that might be carcinogens, workplace hazards, or other kinds of preventive actions that come through the regulatory processes here in Washington, that are debated in the halls of Congress, we just don`t find a large number of these public charities there. We think they ought to be there. They claim, when they are raising money from the public, that they`re interested -- whether it`s cancer or heart disease, birth defects, or lung or respiratory ailments -- that they`re trying to marshall everything they can do. When major issues involving formaldehyde or saccharine or other kinds of additives in food, workplace carcinogens, you don`t find groups like the American Heart Association. American Cancer Society -- you don`t find them there side by side by other public health organizations. We`d like to see them there. We think the public would like to see them there, and we think that the public assumes that they`re there.

HUNTER-GAULT: Are there any charities doing the kind of thing you`re advocating?

Mr. POLLACK: Absolutely. The American Lung Association, for example, has been working vigorously in the Clean Air Act. It has tried to assure that its members, the volunteers that collect money and the public at large support this. This is a model program. It`s a program where they`re trying to prevent the problems involving respiratory ailments, as well as the research that they do, as well as the service programs they have with people who have asthma or other kinds of problems. Epilepsy Foundation, the same way. The Epilepsy people have been working in terms of airbags, trying to prevent other kinds of neurological disorders that happen when people are in auto crashes. This is the kind of mode! activity that can be undertaken. And unfortunately they`re not the largest. We think the largest charities could do much more.

HUNTER-GAULT: All right. Speaking of a larger charity, you`ve singled out as one of the four you want to look into the American Cancer Society. How. specifically, are they not doing what you think they should be doing?

Mr. POLLACK: Let`s be clear about the American Cancer Society, first of all. It has integrity. Its people are honorable men and women. They are very, very interested in the issue of cancer. However, when you look at the issue like formaldehyde -- in which a whole series of different medical studies have shown it`s a carcinogen, and a report by the American Cancer Society itself was delivered to its own board last February. Where have they been on this issue? They haven`t adopted any position on formaldehyde. On the issue of tobacco subsidies. At this very moment, as throughout this summer, there have been a whole host of debates about whether or not the federal government ought to be subsidizing tobacco, a known carcinogen. The American Cancer Society is on record opposing those tobacco subsidies, and yet, when I spoke to Congressman Petrie, who`s the main sponsor, he has never seen or heard of the American Cancer Society in the halls of Congress. These are the kinds of real-world issues that individual kinds of diet or individual habits themselves will not address. We have to look at both as a societal problem as well as the individual diet and other kinds of habits.

HUNTER-GAULT: Just very briefly, what do you think is preventing groups like the American Cancer Society from speaking out or taking positions you think they should take?

Mr. POLLACK: It`s very hard to say. A tremendous amount of it has to do with the fact that we`re now ending the horse and buggy days in terms of different types of lobbying. A single individual years ago might have been able to lobby in this field. The American Cancer Society only has one individual in Washington. D.C. We don`t think they`ve caught up to the reality that the Tobacco Institute, which they are combating quite frequently, has over 80 individuals here in this city alone. Not to talk about the other large trade associations and corporations. Another part is, well, they don`t want to rock the boat. You might almost say -- I`m exaggerating just a bit -- but they have a good thing going, so to speak. They`ve been able to raise over $180 million from the public and from other revenue sources each year. And you don`t want to change that particular formula. So I think that they`ve been very slow to change. I think that there are honorable people who are interested in change, are pushing within the Society, recognize that they have to reexamine their own policies, take a fresh look at themselves in the `80s, and determine whether or not there`s a new role for them to play for the society as a whole.

HUNTER-GAULT: All right, thank you. Jim?

LEHRER: The American Cancer Society`s response, now, from the Society`s chairman, Allan Jonas. Mr, Jonas is a Los Angeles businessman who has been a Cancer Society volunteer for nearly 30 years. He`s with us tonight from the studios of public station KCET in Los Angeles. Mr. Jonas, do you believe the Society is involved enough in public governmental issues as outlined by Mr. Pollack?

ALLAN JONAS: Well, first of all, I would like to make it very clear that I think Mr. Pollack and those others like him in the public interest field, serve an invaluable service to our society. And I think their criticism should be welcomed.

LEHRER: Is it, by the American Cancer Society?

Mr. JONAS: I beg your pardon?

LEHRER: Is their criticism welcomed by the American Cancer Society?

Mr. JONAS: Oh, yes. Yes, it is. Let me tell you that I do believe that he would be pleased if he knew all the things that we are doing and are planning to do, and that we probably will never make him happy completely when it comes to our techniques of political action nor our priorities. Let me begin by admitting that the American Cancer Society and most other voluntary health agencies come late to the field of political action. There`s good reason for it. For decades we have been trying to become expert in buying research to find the prevention and cure of cancer, of trying to educate the public so that it will seek early detection, and thereby save many lives. And finally, to serve the cancer patient, including rehabilitation. So political action is unfamiliar territory to this rather large group of health professionals, laymen, staff and ex- cancer patients. About three years ago we recognized that there was a need to get into the fray, and we agree completely with Mr. Pollack that there should be involvement. I think the public expects it. I think the public wants the decades of experience that we have accumulated in dealing with cancer to be communicated properly to our elected officials, both on the local, state and national level. So about three years ago we formed a public affairs committee composed of most of our politically active volunteers, and we have been taking very important steps in what he would like to see us do. But here is where we will differ: our primary belief in the field of political action is that our priority should be the cancer patient and his family. Therefore, we will really go to the mat on such issues as job discrimination for cured cancer patients, the waiver of the six-month waiting period for the cancer patient with inoperable cancer for his disability insurance payments. After that, we feel that we must only tackle those carcinogens and environmental causes of cancer once incontrovertible evidence is in.

LEHRER: So that would -- formaldehyde would fall into that category, that the evidence is not quite in yet?

Mr. JONAS: That is how we feel. And when it comes in, we will take a stand, as we have done in the past -- and I think then Mr. Pollack will be pleased with us. But you see. there is a need for two such organizations, both of which are totally unbiased, have no stake in the results -- Mr. Pollack`s, and voluntary health organizations -- he at the cutting edge asking the questions, and those of us who have large constituencies not making any statement until it is certain.

LEHRER: And in a word, then, you`re saying the American Cancer Society is not afraid of rocking the boat if and when the occasion arises. Is that right, sir?

Mr. JONAS: It has a long history of rocking the boat. I could hardly believe my ears when Mr. Pollack said that we would be fearful. We were the first to take on the powerful tobacco industry 20 years ago, when we -- a survey conducted by our volunteers unearthed the dreadful truth that heavy tobacco abuse and lung cancer were correlative.

LEHRER: Mr. Jonas, thank you. Charlayne?

HUNTER-GAULT: How about that, Mr. Pollack?

Mr. POLLACK: Excuse me?

HUNTER-GAULT: What about the point that Mr. Jonas just made, that they are not fearful, and indeed, they have taken on the tobacco industry, and basically that you`re not right in that assessment of their activism.

Mr. POLLACK: Well, first of all, I think that we have to have our hats off to the American Cancer Society for the work they did, starting 20 years ago, when it was quite unpopular, on the issue of tobacco. However, since then, we now know that between 60 and 90 percent of all of the kinds of known carcinogens come from the environment. And it seems that we have to begin to get up to speed to the `80s and not just simply in the `60s.

HUNTER-GAULT: But what about his point, excuse me, that what you`re asking him to do is take stands on issues before all the evidence is in?

Mr. POLLACK: Well, I`ll tell you this. The American Cancer Society has had since February of this year its own funded report by Dr. Selikoff and Dr. Hammond -- two very close scientists within the Cancer Society -- whose entire panel has agreed that the Association ought to take a position on formaldehyde, that it is a carcinogen. It`s been sitting there, sitting idle, and only this week. Dr. Arthur Upton wrote to the Environmental Protection Agency and the Consumer Products Safety Commission saying, "Here it is. We know that this is a carcinogen." I beg to differ with Mr. Jonas. We`ve agreed in many areas. But the fact is that their own report has been stagnating within the American Cancer Society. No action has been taken so far.

HUNTER-GAULT: Briefly, Mr. Jonas, can you respond?

Mr. JONAS: Yes. We will be meeting in November to discuss the issue, and probably will at that time take a stand. But, Charlayne. it is terribly important that we do more than just lobby our elected officials. We must educate the public so that when a law is passed, the public complies, and the government enforces the regulations that it has. These are two very important functions the American Cancer Society can and will continue to fulfill.

HUNTER-GAULT: Let me just see if I can get a brief comment from each of you about this whole matter of broadening the scope to include public policy formulations. Starting with you, Mr. Kemp, do you feel that to do that would weaken the ability of your agency to do what you`ve been doing so well up to this point?

Mr. KEMP: Well, I think that health organizations -- public charities -- should be responsive to the memberships of those organizations, and to the wishes of the people. They`re serving a governmental purpose. They receive a tax break, and people that contribute receive a tax break. And I think that they should be responsive to the people.

HUNTER-GAULT: Mr. Sampson?

Mr. SAMPSON: I think on behalf of the Muscular Dystrophy Association, we`re already doing that. We conduct a massive public education program on neuromuscular disease in addition to research and taking care of our own patients. And our research is the largest single neuromuscular research effort in this world, and it benefits many other diseases -- other than neuromuscular diseases, of the 40 identified in our organization.

HUNTER-GAULT: Mr. Pollack?

Mr. POLLACK: Over 2.3 million people are volunteers for the American Cancer Society, and many others contribute. They`re, in fact, stockholders of the Cancer Society. Yes, we think it`s a proper obligation, a proper responsibility of every single charity that purports to work in a certain area of disease not only to work in research, not only to work in the area of service, but also in public advocacy.

HUNTER-GAULT: Have to leave it there. Jim?

LEHRER: Mr. Pollack, thank you. Mr. Jonas in Los Angeles, thank you very much for being with us. Gentlemen here, thank you very much. Good night, Charlayne.

HUNTER-GAULT: Good night, Jim

LEHRER: Have a nice Labor Day weekend. We`ll see you on Monday night. I`m Jim Lehrer. Thank you and good night.