Ted Kennedy, Jr. - Living Up to Expectations
by Cindy Phiffer
At the age when most kids are worrying about losing their allowance, Ted Kennedy, Jr., lost his leg.
“To a seventh grader, a pimple on your cheek is a catastrophe. Here I was coming to school not looking too well,” Kennedy recalls, “because of the chemotherapy and everything that I developed as a result of that…the mouth sores and losing my hair. But I recall more vividly being embarrassed to take off my artificial leg in the locker room. To me, my stump looked scarred and purple and deformed and disgusting, and I was just really ashamed of myself.”
This was certainly not the picture captured and distributed by the media when a 12-year-old member of one of the most powerful families in American history was diagnosed with an osteogenic sarcoma – cancer of the bone and cartilage.
“I was playing football in school and I can remember my leg hurting for an abnormal period of time after I would fall down,” says Kennedy. “I knew that there was something wrong, so I suggested to my parents that they take me to the doctor. I think at first they thought it was a calcium deposit in my knee, as a lot of young boys get in the seventh and eighth grade. About a month or two later, it really started throbbing and I went back to the hospital. X-rays were taken, the biopsy was done the next day, then the following day I lost my leg. About two years of chemotherapy followed that.”
“I lost the leg in November, and I was skiing again that spring,” according to Kennedy, “so my recovery was pretty quick. I was sort of cast in this courageous superhero type of image.” This unrealistic representation of cancer shadowed the young man’s recovery process.
Photos of the dashing adolescent on the slopes were devoured by Americans, hungry for stories of bravery at a time when our country was politically shaken. Behind the pictures, Kennedy was experiencing ups and downs of another type.
“My story had a lot of notoriety,” Kennedy remembers, “and I received a lot of attention. I was put up on this pedestal as this sort of gutsy young boy, and it was a lot to try to carry that on. I felt like in many ways I had the weight of the world on me, and I needed to succeed. It was a very difficult period, yet, I felt like I had a lot of responsibility to keep a stiff upper lip.” Not surprising for a Kennedy, but not easy for an adolescent by any name. “Paradoxically, a lot of the support and attention that I got was difficult for me,” he admits. “I felt like people put me in a position where I had to succeed.”
“I felt like in many ways I had the weight of the world on me, and I needed to succeed. it was a very difficult period, yet, I felt like I had a lot of responsibility to keep a stiff upper lip.”
“Back then, there was just very little emphasis placed on the emotional rehabilitation of the patient,” Kennedy says. “The attention was almost strictly focused on the disease and very little emphasis was placed at all on, you know, how I felt, how I was doing, how traumatic this was, how painful this was, how upset I was, how angry I was and all of these emotions are very normal when someone is diagnosed with this type of illness.”
After a short pause, Kennedy continues to speak evenly, honestly, yet without bitterness. “I never spoke to a psychologist or anybody about the emotional impact. Most of the emphasis was placed on treating the cancer as opposed to treating me as a patient.”
Fortunately, a lot has changed since 1973. Due in large part to the flood of information which has been gathered and dispersed over the past couple of decades, recognizing the needs of the whole person has become a more common approach to developing a treatment plan. Kennedy acknowledges, “Today there are lots of self-help groups and people talking with one another and sharing common experiences. More and more people today are recognizing that it’s a very important part of the whole recovery and rehabilitation. I think that was probably understood by many in the field, but it didn’t have the sort of recognition as it does today. That was sort of this warm fuzzy stuff, but now people recognize that that’s an important component in the whole healing process.”
Rather than allowing his challenges to stand in his way, Kennedy sees his past as the sculpting of his present and a base on which to build the future. He uses what he has been through to fuel his actions.
“My whole experience has made me a much more sensitive person,” he says. “I know I’m the person I am today because I’ve had the experiences that I’ve had. I wouldn’t trade that.”
Part of that experience was learning the importance of his own involvement in his recovery. Taking an active role is something which Kennedy considers crucial to recovery, and he stresses its value. He urges cancer survivors to “spend time talking with their doctors about what’s the matter with them, what the different courses of treatment are, and what are the ramifications of each treatment option.”
Today, Kennedy uses his personal encounter with cancer to smooth the way for those with health challenges. Currently a teaching fellow on disability policy at Harvard University’s John F. Kennedy School of Government, he has worked extensively with policy makers and the corporate world in the areas of expanding job opportunities for people with disabilities and other issues pertaining to the Americans with Disabilities Act.
“People are more aware of the stereotypical assumptions about people with cancer and other illnesses and disabilities, as well as their own prejudices than they were years ago,” Kennedy says. “However, there are some challenges that remain. One of them is that we have seen discrimination creep into the employment arena regarding people with cancer.”
“One of the most significant areas is the whole nature of insurance. People feel that if they hire somebody with cancer or a history of cancer, it’s going to drive up their insurance rates. But because so many people get their insurance through their employers, it’s very important that we address the problems of discrimination in the workplace against people with cancer or children with cancer. Decisions by employers are sometimes based on whether you have a family member with cancer because it means the same thing when that person joins the employer’s health plan. This type of discrimination is against the law through the Americans with Disabilities Act.”
“I never spoke to a psychologist or anybody about the emotional impact. Most of the emphasis was placed on treating the cancer as opposed to treating me as a patient.”
“Once a position or job is offered,” explains Kennedy, “it is against the law for somebody to then make these sorts of inquiries and alter an insurance plan as a result of these inquiries. These are some of the areas that we have to watch closely. Particularly now as this whole healthcare debate continues over the next several years.”
What Kennedy refers to as “this whole healthcare debate” has recently taken on new meaning, with breakthrough developments in research and technology. As he beings to address this topic, his voice takes on a sense of urgency. “I’m sure you’re familiar with the term ‘pre-existing conditions.’” he says, then elaborates. “You have some sort of condition that then can be used to disclaim any coverage either in health insurance or in life insurance as well. I’m concerned with the new information that is emerging in the whole genetic testing area, for example, and our ability in the near future to detect either through family history or through direct testing somebody’s propensity to develop certain types of cancers.”
“In some ways, that’s useful information because it can instruct somebody toward preventive measures that they can take. But this can also be used for wrongful purposes by insurance companies as an excuse to exclude people even more than they are already excluded, you see? So I think a very interesting debate is taking place, and I think that people with cancer should pay very close attention to the debate of genetic screening and what it will mean because it has ethical considerations as well as financial and social.”
Because of the potential impact on the cancer community, Kennedy urges survivors to become educated about these issues. “I would encourage people to ask the important questions, “Who is going to control this information? We know that the sooner that we detect and intervene in the cancer, the much better the chances of recovery and survival. So it can have tremendous positive affect, but it can also, I think, have a use in a detrimental way to exclude people from insurance.”
Kennedy continues to work for the improvement of public health in a variety of ways. With a Master’s degree from Yale University’s School of Forestry and Environmental Studies, he now focuses much of his energy on studying environmental factors which lead to disease and disability. As a member of the research faculty of the Yale University School of Medicine since 1992 and as director of the New Haven Lead Safe Home and Health Project, Kennedy has been instrumental in the comprehensive community-based initiative addressing pediatric lead poisoning, one of the leading known causes of mental retardation.
In addition to his work for the Yale University School of Medicine, Kennedy is also working toward his law degree at the University of Connecticut School of Law. Upon completion, he will continue his career in disability law and public health law. A respected speaker on approaching life with a disabling condition, the civil rights movement from a disability perspective, healthcare reform and other topics, Kennedy is aware of the opportunity he has to stimulate dialogue and instigate change on a national level.
However, when asked how the greatest change comes about, Kennedy responds without hesitation, “I think people can do it in their own way, just through living their lives and through the power of example. Frequently, the most powerful mechanism is just going to work, raising your family. These are very powerful messages that people can send to other members of their community, dispelling the notion that cancer is some sort of miserable thing, or to have some sort of disability is a negative, pitiful sort of existence.”
“I don’t think people need to go on a national crusade, necessarily. Most people are trying to fight with their HMOs, trying to have them approve their new drug therapy. Those are the real struggles most people with cancer face. They just want to get back to work. They’re not these huge superhero feats that we read about in the press.”
There are many words – proactive, honest, determined, motivated, compassionate, humble – which can be used to describe Ted Kennedy, Jr. “Disabled” is not one of them. Nor is he the superhero the press created over twenty years ago. He is a survivor who is busy discovering what he can do for his country.
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This article was originally published in Coping® with Cancer magazine, July/August 1997.