S.C.A.R.E. founders Ivor and Deborah Pannell to appear on the Montel Williams
Show on Monday, October 16th, to participate in a discussion on Race in
America.
As an inter-racial couple, the Pannells have a unique perspective on issues
of race when it comes to obtaining adequate treatment and services for Ivor's
sickle cell. After seeing the recent article on sickle cell disease in the
New York Daily
News that featured an extensive interview with Ivor, the
producers of the Montel Williams Show requested that he and Deborah come onto
the program to detail some of the troubles they have had around the issue of
filling prescriptions for pain medication.
Tune in to see how they frame the issues in the larger context of human
rights abuses and the resulting need for advocacy in the sickle cell
community. If the good bits make it to the final edit, an important message
will reach over 4 million television viewers! Check your local listings for
broadcast times in your area.
And this is what happened... Adventures in TV Land - a Cautionary Tale Or How Half A Story Can Be Worse Than No Story At All
Recently, my husband Ivor and I were asked to be guests on the Montel Williams Show. Ivor had just been featured in a full-length article on sickle cell disease in the New York Daily News. In it, the writer had led the piece with a story Ivor had told her about once having gone to eleven different pharmacies in one day trying unsuccessfully to fill a prescription for pain medication, only for me to fill the same prescription at one of those same pharmacies the following day. The producers were looking for stories to include in a show on Race in America in the year 2000. I guess they thought that a tale such as ours coming from an inter-racial couple would make the perfect addition to their program.
Our first impulse was to say no - flat out, NO. We had had our experiences with radio and television in the past, and it was the rare time that our perspective was represented accurately or comprehensively. We did not want to put ourselves in the position of looking foolish or wasting our time in a program that wasn't even fully dedicated to the topic of sickle cell disease. However, the lure of national coverage during sickle cell awareness month (the show was shot during September), was strong. What if we were able to use the appearance as an opportunity to spread the word about S.C.A.R.E., our budding non-profit organization? What if we were able to get out a positive message about the empowerment of the sickle cell community? Could we pass this up?
We put it straight to the producers - we were not interested in sitting on a panel with any members of the Aryan Nation or a Grand Wizard of the Ku Klux Klan. They assured us this would not be the case. We explained carefully that we led an organization that was dedicated to the empowerment of the sickle cell community, and that we would only consent to our participation in the program if our story could be presented in the appropriate context. That meant that we would be able to articulate that these types of problems, though common for members of the sickle cell community, could often be avoided with the appropriate kind of planning. Our emphasis was on the development of advocacy skills necessitated by the potential for such mistreatment, not just the telling of a terrible tale...
In retrospect, we should have known better. Talk shows, although purporting to deal with serious issues, are basically created as entertainment for the masses. More and more, this means that intelligent discussion is eschewed in favor of sensational stories filled with salacious details. Their intent is to stimulate excitement, anger or quick tears of sympathy. To his credit, Montel Williams has largely stayed away from the kind of name calling and physical confrontation celebrated on shows like Jerry Springer or Ricki Lake, and his much publicized bout with multiple sclerosis made him, we thought, someone who would be more sympathetic to our cause. Boy, were we wrong.
Given the appropriate assurances as to the level of sophistication of the programming ("We don't have Klan members on our show...") and the encouragement to speak out as much as we wanted on the issues that are important to us ("It's a talk show! You gotta talk!"), we decided to do it.
I won't say that we were fully unprepared for what followed. Knowing from our pre-interviews that they were going to want to focus pretty heavily on "the story," and warned by one of the producers that Montel "tended to go on," and so we would really need to be aggressive to get our message out, we resolved that one or the other of us would make sure to get the necessary points into the discussion before the show was over. Also, although we had been told that it wouldn't be possible to put our professional credits on the screen under our picture (the name of our organization was too long, they said...) we were assured that the name of our organization, the telephone number and the website address would be posted on the way to a commercial break. Well, this sounded good. At the very least, we could mention S.C.A.R.E. and get out our contact information out to an international audience.
Much to our surprise, at the last minute, we were asked to join the African American woman who, along with her eleven and twelve year old children had been the victims of a bogus traffic stop and held at gunpoint by racist police officers, as the other primary story telling guests to join Montel up on the main stage. This was instead of the seats in the "special invited audience" section with the other guests - the arrangement that we were originally expecting. We had replaced the young woman whose Native American father had been killed riding his bicycle by a white woman automobile driver who had received no civil or criminal penalty whatsoever for causing his death.
Backstage, awaiting our turn to go onstage, Ivor and I realized that we were going to get even more screen time than we had originally thought. Surely this could only work to our advantage. When our time finally came, we were introduced as we walked out on stage and took our seats next to Montel. He took us step by step through our story of Ivor trying in vain to fill his prescription at the now infamous eleven pharmacies. He stroked the audience's disbelief as I proceeded to tell how I was able to fill the same prescription at one of those same pharmacies the very next day.
Then came the important part. Ivor went on to describe how after talking to people with sickle cell disease all over the country, he had learned that these types of incidents were common and pointed out the need for skills building of a particular kind. I described how we had learned the wisdom of establishing a relationship with a pharmacist during a time when Ivor wasn't ill. Thus we could avoid the kind of mistreatment borne of suspicion and unfamiliarity that we had encountered in the past. So far so good. Now we just needed to plug S.C.A.R.E. and make the connection to the development of a community empowerment movement.
Well, there was no member of the Klan on the show, but there was one racist man with whom Montel spent two full segments arguing about the logic of racism. I guess it was important, because in the end, Montel was able to show him that since we all come from the same place, and the first humans were from Africa, then he (the racist white man) was merely "a black man who had lost his color"... At this point, we were beginning to get a different sense of why they call this a talk show. It seemed as if the one person who was doing most of the talking was Montel!
A look at the clock showed us that time was running out. With one segment to go, and Montel engaged in an argument with a woman who had written a book on the notion that racism could be ended by changing individual beliefs, Ivor threw himself into the fray. Citing a study about pharmacies in non-white neighborhoods being less likely to stock strong pain medications than those in predominantly white neighborhoods, Ivor pointed out that evidence of institutionalized racism such as this indicated a problem that extended beyond individual attitudes and beliefs. Thus, he argued, there is a need for organizations such as OURS, Sickle Cell Advocates for Research for Empowerment, which helped people to develop the advocacy skills necessary to cope with policies borne out of institutionalized racism. Touchdown! Now all we needed was for the editors to be kind to us and for the graphics department to follow up the segment with our contact information, including our phone number and website address.
When the show finally aired several weeks later, we realized what the purpose of our appearance on the program actually was... We were not there to play the role of empowered advocates for the sickle cell community. We were there to play the role of Victim (the title under Ivor's image read, "Has Trouble Filling His Prescriptions") and Victim's Wife (mine read, "Ivor's Wife"). Gone was anything of substance that either of us had uttered. Gone was any evidence of our organizational affiliation or our response to our own situation in the context of our ongoing advocacy work. We had been stripped of the basic elements of our hard earned identities and rendered impotent. We had been portrayed as embodying the same kind of powerless, complaining posture that had motivated us to create our organization in the first place, nearly six years ago! It was then that we realized, perhaps we had done more damage by allowing this half a story to be broadcast to millions of viewers without the proper context.
What was even more disappointing is that, despite the numerous conversations we had had with various members of the production department, no attempt whatsoever was made to honor our stated condition that we would only participate in the show if our story could be told in the context of our ongoing work in the sickle cell community. It was as if those conversations never even took place. What's more, there were a number of individuals who participated in the program who had professional affiliations and titles even longer than ours, who had this information up on the screen with their image as they spoke. Founders and representatives of various organizations, the authors of several books, all had their credentials presented prominently with them on the screen. Clearly it was not the length of our titles that were objectionable, but the fact that presenting us in the context of our advocacy work might make us appear too empowered for the roles in which we had been secretly cast.
Oh yes, in fairness to the producers, I should mention that they DID make good on their promise to list our contact information. At the end of the credits, there was a special thank you to our organization (along with several other organizations) on the bottom of the screen that flashed for about a half a second - long enough for you to miss if you blinked. So much for the international exposure. So much for the opportunity to get our message out.
People have said to us since the broadcast, "You guys did great," "You looked wonderful," "You told your story so well," etc. While all of this may or may not be true, the fact remains that without the proper context, the public telling of our story may have done more to hurt the cause of the empowerment of the sickle cell community than to help it. Because the truth is, many people have terrible things happen to them. They are a part of life, and in many cases can be due to inherent problems in our system which require fixing. In the situation of a person with sickle cell disease who needs to fill a prescription for strong (in this case, narcotic) pain medication for the symptoms of his illness, when that man goes to no less than eleven pharmacies in his community and cannot fill his prescription, even after being assured by telephone beforehand that he could, there is a problem. When that African-American man's Caucasian wife proceeds to fill that very same prescription the very next day at one of the very same pharmacies, than we rightfully suspect that the problem is at least partially based in some form of racial discrimination. However, it is then that the real work begins. That is when we need to do the work to educate the public about our needs as a (sickle cell) community. To merely tell the tale without the appropriate follow up inadvertently sends the message, "feel sorry for us."
Here, instead, are the messages we had originally intended to get across in this broadcast. Ignorance about sickle cell disease is often compounded by societal prejudices of race and class. These in turn breed new and unique prejudices specifically targeted at members of the sickle cell community. By understanding this process, we as a community can develop skills that will empower us to effectively handle, or completely circumvent the types of situations we found ourselves in with regard to the pharmacies.
One of the main things we in S.C.A.R.E. advocate is for people with sickle cell disease to establish a relationship with a pharmacist when they are NOT in crisis. At a time when you're not ill, it's a good idea to go into a pharmacy, if possible with the family member who may be assisting you in filling your prescriptions when you're too ill, and introduce yourself to the head pharmacist. Provide him or her with your doctor's name and phone number, the name of the hospital at which you are treated, and a list of the medications you frequently require. Make sure that the pharmacy accepts whatever prescription plan you are on, and that they stock the medications you need. By taking these preparatory steps, you won't have to face a needless barrier to appropriate treatment for your illness when the time comes for you to fill your prescription.
In the future, when asked to participate in a television broadcast, I know that we will be much more careful about our choices in this regard. From our experience we share the lesson that it is not merely the opportunity to be on TV that matters, but the confidence that our message will be presented in a way that properly serves the needs of the sickle cell community.
on the Montel Show!
S.C.A.R.E. founders Ivor and Deborah Pannell to appear on the Montel Williams
Show on Monday, October 16th, to participate in a discussion on Race in
America.