What Is Advocacy?
In cancer survivorship, advocacy is a continuum. It may begin at the personal level, but as the survivorship trajectory changes, self-advocacy efforts may broaden to encompass first group or organization advocacy, and later may move to public advocacy efforts.
At diagnosis and during treatment, self-advocacy is a way of taking charge in an otherwise overwhelming environment of diagnostic tests, surgery, radiation, chemotherapy, and doctors’ offices. From arming oneself with good information, to seeking second opinions, to locating resources for identifying and obtaining support, to knowing how to ask the right questions — people with cancer can become self-advocates. Personal empowerment can mean the difference between maintaining a positive outlook and enhancing quality of life or feeling helpless and less certain.
Many find the years after a cancer diagnosis to be a time of reentry and reevaluation. It is during this time that cancer survivors realize that their lives will never be the same. Family and friends cannot understand why survivors are not happy simply to be alive, and support systems that were in place during the treatment may diminish or disappear. It is at this point that many survivors seek out other survivors with whom they can identify.
This life transformation, at any age, calls for another type of self-advocacy. With the underlying idea that they “want to give something back,” in gratitude for their survival, many survivors seek out avenues to share their experience with others. This shared knowledge, the idea that information is powerful — the veteran helping the rookie notion — is what the survivorship movement is largely about. Whatever the context, this structured transmission of wisdom from a more seasoned survivor to the newcomer provides a strong foundation for people who have had cancer to play a more proactive role in making decisions about their lives.
Advocacy for Others
Having been successful in exchanging information with others who share a cancer experience, survivors can extend their advocacy efforts to the larger community. Through networking with other persons in their area, survivors can learn more about specific issues (e.g., sexuality, infertility, job discrimination, insurance access, or reimbursement problems). Armed once again with valuable information, cancer survivors can go on to tell others their shared experiences and advocate for changes that can have a broad impact on survivorship.
One of the easiest and most satisfying ways to advocate for others is to speak at the local community level — to church and civic groups, to medical students and physicians, oncology nurses, social workers, and others — to educate them about the complex interpersonal and psychosocial issues that dominate survivors’ lives after a diagnosis of cancer. This public speaking becomes a testimony that affirms one’s survival, defies the myths and stigmas about cancer that are still much in evidence in our society, and perhaps reaches others who are silently struggling with similar issues.
Public Interest Advocacy
The exponential growth of the survivorship movement increasingly is realized by the many long-term survivors who go on to become professional survivor advocates. These individuals have taken their learned experiences from diagnosis, through treatment and recovery, and become advocates participating in the national cancer survivorship movement. Particularly notable among them are those who have effected change in public policy including appropriations for cancer research; those who have pressed for more survivorship research; those who have given public witness testimony at both the local and federal levels of government; and those who have contributed to the body of knowledge about living a better quality of life after a diagnosis of cancer, either through professional journals, or the popular press.
By telling “one’s story,” including print and broadcast media, the net is cast much wider. Advocacy training for media relations is a burgeoning field of interest among consumer groups today and provides yet another avenue for survivors to “testify” about their experiences.
As people with a history of cancer recount their stories in the community and to the media, they become recognized experts on the compelling issues that have impacted their lives and the lives of the community of survivors with whom they have become involved. Depending on one’s vocation, avocation, or other life circumstances, the interest one takes in sharing this experience is limited only by the desire to speak up — whether it is survivor-to-survivor in support groups, in the workplace, before state legislators, or to Congress. Advocacy is an invaluable skill set that can empower persons with cancer and can maximize the quality or their own survival as well as that of others.