One of the problems that we have in the Ojibwe community is the belief by some that cancer is a stigma. As defined here, stigma is something that has a negative association attached to it and viewed as a mark of disgrace. Indeed, to even mention the word is a stigma. The existence of cancer is denied by not giving voice to it.
I’ve thought about some people that I know who have died from cancer, in which a relative or loved one said: “They didn’t know they had cancer. But when they opened him/her up, s/he was filled with cancer.” How is it that someone has reached a point that their cancer has killed them without knowing they had cancer? A person whose body is “filled with cancer” would be subject to intense pain, so how could they not know something was terribly wrong inside their body? The answer to that is denial and denial is one of the results of viewing cancer as a stigma. Diana Barkwell wrote about an Ojibwe cultural response to cancer that she called “blocking.” Blocking is essentially the result of treating cancer as a cultural stigma. Barkwell writes: Interestingly, responding to the disease initiated a complex posture of blocking which was characterized by inaction on the part of the individual affected and all others threatened by it. This inaction was expressed in elaborate efforts to close down all avenues of a threat. The posture assumed in order to protect oneself at all levels of awareness was captured in the recurring themes of: "We don't talk about it" . . . "I cut her off right away" . . . and "I blocked it out." All of these responses seemed to be efforts at closing off any discourse on the subject. The parameter of blocking extended to include perceptions around the action to physically "open" or "close" the body by any invasive measures (e.g., surgery). The following responses from the perspective of patient, care-giver relative and healer illustrate this. Patient: "I can't have them open me up 'cause as soon as they do that you're done." Care-giver relative: "If you open it up, it just goes all over" Care-giver relative: "I don’t know if it's certain types of cancer, I guess, but it's almost like it wants to be left alone. You leave it alone because, for some reason, once you open the body they seem to thrive on the air . . . I don't know. This is just what I think." Healer: “Cancer creates an opening for something negative to enter his body." Taking action to expose the disease by invasive measures was perceived to have the effect of opening the possibilities of fatal consequences. It also held the potential to stimulate action on the part of the disease: the "spread" of the disease. This in turn exposed the body to "something negative" and activated the disease on its lethal course. Inaction could prevent this: "You leave it alone." Therefore, blocking involved not only closing all discourse on the subject, as discussed above, but it also involved containing the disease by permitting it to remain closed within the body. The dynamic properties of closing rather than opening and of inaction rather than action were again the properties of blocking which clearly made it operational as a means of assuring protection from harm and exposure to "something negative."[1] My own experiences with cancer provide examples of blocking. In February 2013, I didn’t feel well. Something was wrong inside my body. There was blood in my stools and I was plagued by a bone weary fatigue. The fatigue I felt was different than the fatigue I had that preceded my heart attack, and angioplasty, that I had in November 2012. So I knew it wasn’t related to my heart condition. This was something different and I knew, intuitively, that it was cancer. My initial reaction was if I left it alone, it would go away. So I waited. Then, in mid-April, I decided to go to my doctor and have it checked out. I felt that I not only owed it to myself but also to my family. My blood work revealed a low red blood count. When my doctor asked if I would be willing to see a gastroenterologist specialist, I knew it was a serious situation, one involving the big “C.” Perhaps blocking is a natural reaction that is based on one’s experiences with cancer. In my case, my father died from stomach cancer in 1972. When he was diagnosed, he was already terminal and the doctors gave him only a few months to live. He ended up living eight months before he passed on. But I remember well his suffering, pain, and physical deterioration before cancer took his life. Given that experience, I had a fear of cancer. And when I faced the reality of contracting cancer, my initial reaction was to block it. Of course, after some deep soul-searching, I decided to seek medical attention and that led to another blocking experience, one more strongly attuned to Barkwell’s definition of cultural blocking. A large tumor was found in my ascending colon during a colonoscopy ordered by my specialist. A sample was sent for a biopsy. Regardless of the outcome of the biopsy, my specialist scheduled surgery to remove my ascending colon. She felt the risk was too great. I had about a 2 ½ week window before surgery, and during that time I talked to several elders. These people weren’t healers or medicine men/women. But they had opinions based on traditional perceptions. The common refrain I heard from them was that “once they cut you open, the air will hit the cancer and it will spread.” They then offered various remedies based teas or poultices made from the roots of plants and trees. One knew people who knew other people who knew a medicine man in South Dakota who could help. Their suggestions and advice gave me pause for thought, but I decided that the risk was too great to solely rely on traditional remedies to cure my cancer. I had seen photos of my tumor and there was, in my opinion, no traditional medicine that could halt or shrink the tumor inside me. Therefore, I decided that Western medicine was the only avenue open to me to help me deal this disease. Barkwell also writes about unblocking: Conditions which evidenced a change in blocking to one of "Un-blocking" was demonstrated in those patients who had experienced the detrimental effects of "blocking." That is, those who had seen themselves as having survived the cancer and those care-giver relatives who had witnessed the impact of blocking on themselves and family. The inherent characteristic of Un-blocking was that it involved confronting the reality of cancer and opening discourse on the subject of cancer. Those who engaged in Un-blocking demonstrated 1) insight and spoke of actions they were currently taking to prevent the devastating consequences of blocking and they 2) spoke of what they had learned from having experienced the consequences of blocking.[2] The outcome of unblocking at the community/cultural level is that it allows for the development of cancer awareness and establishment of prevention programs and screenings. It is the survivors who speak about their experiences that open the discourse on cancer. And it’s a discourse that we need to press forward with. My own experience is indicative of the problem that continues to persist among some of our people. Thirteen years after Barkwell’s study, some of the elders that I spoke to saw cancer as a cultural stigma. And, most importantly, these were not elders from a remote Ojibwe community that were the subjects for Barkwell’s study. These were elders from Ojibwe reservations in Minnesota where cancer awareness has been established with prevention programs and screenings. Obviously, the stigma continues to be a problem. Barkwell further writes: According to the healer, naming, especially in the case of cancer, had the potential to influence the mind to anticipate negative outcomes. Hence, negative thoughts created negative realities and blocking was a means of avoiding that…What appeared to be central to the phenomenon of blocking by these Ojibway participants was the belief that the less one talked about the disease cancer, heard about it, or claimed ownership of it as part of a common life experience, the less potential it had for being entrenched in the psyche of the community as a bona fide threat. Closing off discourse on the subject, therefore, had the potential to minimize the threat of personal vulnerability. The unfortunate paradox presented by this blocking process was that it permitted a rapidly progressive disease such as cancer, which shows little promise of retardation of its lethal outcome without early detection and quick action, to go unattended.[3] There are some people who don’t like to use the word cancer. They avoid using it. Using the word implies ownership and creates, as Barkwell writes, a negative reality. I’ve had some elders admonish me for wearing my F@ck Cancer hat and hoodie because it attracts attention to the disease. But I’ve never hesitated to own my cancer or to name it. M. Scott Momaday once wrote: “We perceive existence by means of words and names. To this or that vague, potential thing I will give a name, and it will exist thereafter, and its existence will be clearly perceived. The name enables me to see it. I can call it by its name, and I can see it for what it is.” By naming it, I can see it for what it is. By naming it, we can overcome the stigma. Sources 1.) Barkwell, Diana P., “An Ojibway Cultural Perspective on the Illness Cancer and Related Pain,” PhD diss, University of Manitoba, Manitoba, 1999, pages 84-85. 2.) Ibid, page 135. 3.) “Cancer Pain: Voices of the Ojibway People,” Barkwell, Diana, Elserver Inc., Amsterdam, Netherlands, 2005, pages 457-458.
0 Comments
A few weeks ago, I submitted an application to be one of 19 Ignite speakers at the Minnesota Cancer Summit on February 1. Each Ignite speaker would be allowed 5 minutes to speak about their experience with cancer. As stated in the application: “We know you've got an objective you care about deeply and a unique story to support your passion; so please accept this invitation to enlighten Summit participants.”
My objective was to speak about culture. More specifically, recent experiences in which cultural teachings have played a role in my survivorship. My application wasn’t accepted. There wasn't any particular reason for the rejection of my application. The response simply stated that all the Ignite spot talks were taken. The letter also stated: “Your thoughtful and heartfelt proposal is truly appreciated and much needed.” If appreciated and needed, then why the rejection? Now the plan is to possibly have one of the five breakout sessions dedicated to culture and I would be part of it. But first the planning committee has to be convinced of having a breakout session that focuses on culture. So it’s not a sure deal at this point. Of course, I’m disappointed. Not for myself personally, but rather that the Native voice won’t be heard. At least it won’t be heard during the Ignite presentations in front of a large audience. Perhaps I’m being overly sensitive. And I'm not one to easily play the race card. But this reminds me of the problems we encountered when I, as a professional, worked in Indian child welfare. Our voices were deemed as unimportant to the courts, the lawyers, and the system. And it reminds me of the struggles as a parent on Indian education parent committees where our voices were deemed unimportant to the educational system. Why is so difficult to hear us? As a cancer colleague once told me: "It isn't about red tape; it's about white tape." |
Robert Desjarlait
|