The following essay has been written from a perspective that is firmly grounded in an American political and cultural experience. It is not the intention of its author to exclude those readers living outside of the United States. To the contrary, it is our contention that the basic principles espoused therein can and should be applied in the larger context of your own country's political, economic and social circumstances.
As is always the case we invite feedback, suggestions or commentary in furtherance of the objectives of enhancing our community dialogue and developing successful strategies for the political empowerment of the international sickle cell community.
--- The Publishers of defiers.com
The Politics of Power/The Power of Politics:
A Prescription for Jumpstarting Sickle Cell Community Activism
by Ivor Balin Pannell, S.C.A.R.E. Founder
"Why doesn't the sickle cell community have what the AIDS community has?" "Why don't we have what the various cancer communities have?" "Why don't we have what the muscular dystrophy community has?" "Why don't we have what the Parkinson's disease, lupus, multiple sclerosis and, for that matter, the thalassemia communities have?" If you have (as a member of the sickle cell community) heard, as I have, defiers and their family members asking this question of each other from time to time, you may have encountered over the course of years many different proposed answers.
Some in our community answer the question that the reason we don't have what "they" have is because our disease principally affects people of color in this country, hence the argument that it is racism that is responsible for the disparity. Others answer the question by suggesting that the main reason "they" seem to have so much more than we is primarily due to money, or (more precisely in our case) the lack there of. That is, if our community had access to the same amount of monies that the aforementioned communities presumably do, the disparity would again disappear. Although I agree that the above two arguments are sound ones and invariably contribute to the current conditions we in the sickle cell community find ourselves in, I have trouble accepting that either of these theories really cut to the heart of the issue inherent to these questions, or even address that issue in a fundamental way. What is this issue that I maintain is so central to the very premise of the questions above?
To answer this question we must first ask ourselves another: What is this "thing" that all these other communities of the chronically ill are supposed to have that we of the sickle cell community don't? I submit the answer is: power.
It is power that the AIDS community has that we do not. It is power that the cancer communities have that we do not. It is power that all of the communities referenced above have that we the sickle cell community do not. What do I mean by power? It is the power wielded by these communities that is most responsible for the tremendous amount of resources (private, federal, state and local) that they have at their disposal. These resources are directed by the leadership of the various communities, at the presumable behest of their corresponding constituencies, toward whatever areas of need they feel are the most urgent. These areas may include medical research (laboratory and clinical), treatment, or any other type of services they choose for themselves.
In view of the observation that there is a significant disparity between the power wielded by these various individual communities and the power (not yet) wielded by our own sickle cell community, I ask the following: What is it that all of these communities of the chronically ill share in common with respect to their power that, in my opinion, also cuts to the core of and answers the series of rhetorical questions posed above? The answer is that all of these communities use the very same instrument to wield their power, and that instrument is... an organized political movement.
Do we actually think that the resources amassed by the national AIDS community were just freely and willingly handed over to them when, in the late 1970s, it became clear to both the community's leadership and its rank and file member that they were dealing with a crisis of international scope? I think not. Why our then sitting President of the United States, Ronald Wilson Reagan, didn't even publicly utter the word "AIDS" until his second term of office, which didn't begin until 1981. It was as if the entire United States government simply turned its back on this beleaguered community, despite the scientific evidence of the day that was pouring in which strongly indicated that we of this country were on the verge of experiencing a national health crisis of truly epidemic proportions.
The fact is the AIDS community had to fight the powers that be tooth and nail for every concession they could possibly get, and to this very day continue that fight as you sit and read this. And what was the main instrument of that fight? It was and still remains the organized political movement of its people. And it is the use of the instrument of a political movement that all of the communities of the chronically ill, mentioned above, share in common. It is one of the most important and essential tools used in our society by all communities that wish to have a voice, and a way to safeguard their own interests.
In fact, all one need do is study the history of our country in this last century to truly appreciate the profundity of this observation. The great civil rights movement of the 1950s and 60s, the labor union movements, the movement to ensure and protect a woman's right to choose, the environmental movement, the animal rights movement, the consumer rights revolution, the gun control movement, the disabled community movement, the right to life movement, the farm workers movement, and the veterans movement are just a few examples of how a community, composed of individuals that share a common experience and have common priorities, can unify to advance a single national agenda by developing an organized political movement. And it is through this type of political mobilization of its stakeholders that any community of any race, sex, color, sexual orientation or creed can effectively influence the machinery of government. This influence often results in the passage of new legislation and sometimes landmark legal decisions designed specifically to advance and/or protect the rights of the members of that community, as reflected in their own national agenda. Brown vs. the Board of Education (US Supreme Court, 1954), the Civil Rights Act (1964) and the Voting Rights Act (1965), Roe vs. Wade (US Supreme Court, 1973), and of course the Americans with Disabilities Act (1990) are all convincing evidence of what disenfranchised communities can accomplish to protect their collective interests as they define them to be
So, what does all this mean for the sickle cell community? What lessons are there for us to learn in these examples of community political mobilization? The answer to these questions is simple. If the sickle cell community is to ever achieve equal footing with the AIDS, cancers, lupus or multiple sclerosis communities, that is if we are ever going to develop the level of power these communities possess (as measured in the amount of resources and political clout they have at their disposal), we are going to have to, as a people, build a solid foundation of personal political savvy upon which we can ultimately base an organized political mobilization of our masses. And what would the purpose of this political awakening be? Answer: To accomplish the final objective of the true and authentic empowerment of our people in America's contemporary body politic.
So, how does each of us in the sickle cell community begin to develop this personal political savvy I write about? And, what does it actually mean to be political? In my humble opinion it simply means that each of us must make a concerted and conscious effort to be aware of more things political so that we will be in a better position to take action. How can one do this from a practical standpoint? There are many ways. One that is most effective is to put to use a skill many of us learn when we're children: reading.
Read as much politically oriented material as you can get your hands on. An obvious place to start would be your local paper, of course. But don't just limit it to that. Try, if you can, to get your hands on newspapers with international readerships such as The New York Times, The Washington Post, The Wall Street Journal, etc. Scan these papers daily for articles and editorials of political interest. If your lifestyle, preferences or schedule does not permit you to always read the dailies, consider reading some of the traditional national weeklies such as Time, Newsweek or U.S. News and World Report. They are not very long and are easily obtainable at most newsstands and/or convenience stores. If the old school weeklies are too dry a read for you and your taste is for more youth oriented and hip "generation x" writing, then consider such journals of politics and pop-culture as George or Vibe. And certainly, do not forget the African-American press, either. Consider, (if you live in New York City), The Amsterdam News, The Daily Challenge or whatever is the equivalent in your area. Consider the African-American monthlies such as Emerge, Ebony, Essence, etc.
And most important of all, do not just limit yourself to the mainstream press. Open yourself to alternative sources of media such as monthlies like The Nation and Mother Jones, or bi-monthlies such as Z Magazine. Oftentimes, sources such as these will give perspectives and express points of view that rarely if ever manifest at all in any of the major media. In fact if a person is interested in learning more about a particular issue, (or listening to those community voices that speak to that issue), that the major sources of media have deemed to be less than newsworthy, it is the alternative media that will frequently be the sole refuge for journalism focusing on issues and stories that have been marginalized by the mainstream press. This is no more true than in the case of public radio.
Scan your local airwaves to find a station that deals with public affairs issues. If you find one you like, become a regular listener. If you find that this station will often provide you with information or perspectives on current issues that you cannot find elsewhere, or even publicizes a precious community calendar of events and meetings unobtainable any another place, then don't be shy about patronizing it. Local public radio stations, (those that are completely dependent on grants and/or listener sponsorship), are often always on the very verge of extinction, and depend heavily on listener support. Make a donation during its next fundraising drive if you feel that its presence on the airwaves makes a difference for you. It doesn't have to be a lot of money. Whatever you can afford will be appreciated. And if you can't afford to make a monetary donation, you can donate some of your time by volunteering during their fundraising drives to man their telephones.
One example of an excellent, local public radio station in the New York Metropolitan Area is WBAI. It is quite simply the best radio station in the universe, and my wife and I have become loyal listeners and supporters. If you can't find a decent local station, there are always public radio networks. National Public Radio (NPR) and Pacifica (which owns WBAI) are examples of this. So if you can't find a good comprehensive station, you can always look out for some of the nationally syndicated programming of networks like these on your local dial. And don't rule out stations just because they're not public or listener sponsored. Stations don't always have to meet these criteria to provide alternative points of view. Examples here in the New York area are WLIB (an African-American talk-radio station), or WNYC. And, if you are a participant in the computer revolution, you can of course find much of this programming broadcast on the Internet, (e.g., WBAI at porus.com.) The important thing is to expose yourself to as many alternative sources that bring you in touch with as many alternative points of view as you possibly can.
As for television, try to track down shows that focus on political issues or have reporter round tables. Sunday morning shows like Meet The Press with Tim Russert, This Week, Face The Nation and The McLaughlin Group are some examples of weekly shows that focus on political commentary. Of course in the news-magazine medium, 60 Minutes is pretty much the gold standard. Also, if late night hours don't bother you consider watching Nightline with Ted Koppel. And this just covers network television! If you have access to cable or satellite TV, there is a plethora of shows and networks to choose from. CNN has a tremendous line-up of shows providing political commentary. There is, TalkBack Live with Bobby Batista, Crossfirewith Bill Press, Robert Novack and Mary Matlin, The Capital Gang, Larry King Live, Burden of Proof, Evans Novack Hunt and Shields, Reliable Sources, Inside Politics and Both Sides with Jesse Jackson. Other cable networks that are good to check in with are CNBC (shows such as Tim Russert and Hardball with Chris Mathews), MSNBC and one of the best-kept secret weapons for political activists on cable TV today, C-Span. This network provides tremendous insight to the inner-workings of our government not only with its extensive live coverage of the U.S. Congress, but also with popular viewer call-in shows like Washington Journal where you can actually interact with whatever media representatives and national leaders that are the show's weekly guests.
As for programs that focus primarily on the African-American perspective on cable television, the selection is fairly limited. There is of course Black Entertainment Television or BET, but as its name implies this channel provides mostly entertainment programming. However, News with Ed Gordon is certainly worth checking out from time to time. The selection of African-American community affairs programming on network television can sometimes be greater, depending on where you live. There is America's Black Forum, which runs all over the country in syndication. And there are often very developed, community oriented, local programs in large urban areas. Examples in the New York City area are Like It Is with Gil Noble, Positively Black and Visiones. So don't forget to check your local listings.
And if a more international perspective is what you crave, try watching the British Broadcasting Company or BBC news. This can be found on many local public television stations throughout the United States, and will often provide an entirely different point of view on events occurring all over the world.
Once we, as individual members of the sickle cell community, begin to take seriously our responsibility to learn as much as possible about the contemporary American political landscape by exposing ourselves to as many different sources of media and reporting as possible, we will then be in a position to take the next step in our evolutionary process as a people. That is, achieving a new level of sophistication in our community dialogue that will be predicated upon the synthesis of all that is learned from our media self-education campaign. It will be through this process of an informed exchange, that we as a community will finally be able to develop the ideas, strategies and tactics that will ultimately form the backbone of a single, comprehensive national political agenda. And once we have that, we have the beginnings of a legitimate and organized sickle cell community political movement.
So, where does this leave us as a people? I maintain if we are serious about ever diminishing the disparity that exists between the power wielded by our community and the power wielded by other communities of the chronically ill, we have to take certain steps for ourselves. There is no one out there that can do this for us. Each of us must begin to develop a political consciousness. This can be achieved by engaging in your own personal media self-education campaign. Having developed this political consciousness, each member of our community will be in a new position regarding the "goings on" of local, state and national politics and political activity. Namely, we will be in an informed position to take action. This means voting.
If you are not yet registered to vote, get registered. This is achieved by filling out a voter registration form, signing it and either mailing or hand delivering it to your local Board of Elections. The forms may be obtained at the local offices of your Board of Elections, or sometimes even at your local department of motor vehicles. The best thing to do is telephone your city or county registrar of voters, and request that one be mailed to you.
If you have access to the Internet, you can even register on-line at defiers.com, as well as at a number of other websites. However, the most important thing to know about registering on-line is that you are not officially registered just by punching in your personal information with your keyboard and clicking "Enter". This is merely the first step. Later on you will receive by mail an actual voter registration form. This form will either be blank, (thereby demanding you to fill it out and sign it); or it will have the personal information you punched in on-line already filled in, (thereby demanding you to simply sign it at the bottom). Whichever of these scenarios applies to you will be determined by the registration procedures of the website you finally choose. Whatever the case, your registration will not be official until you have (1) personally signed the form yourself, (2) mailed or hand delivered the form to your local Board of Elections, and (3) received subsequent and final notification by mail from the Board of Elections that you're registration is official, along with your very own voter registration card containing information regarding the location of your local polling place. Click Here! to register online.
Now, if as a consequence of your personal educational offensive you have come to the conclusion that there is one particular candidate running in your local or state election that you believe will better represent your interests as a sickle cell community member, then by all means share your ideas with others in our community. Regarding politics on a national level, if there is a particular candidate running for president or a specific party whose platform you perceive to be most closely aligned with your perspective as a sickle cell community member, you must share this outlook with others in our community every chance you get.
Dialogue. Dialogue! Dialogue is the order of the day! It will be through this process of community dialogue, based in large part upon our individual and collective synthesis of the knowledge gained from our political self-education crusade, that a mobilized sickle cell community will finally be able to forge the unifying political agenda necessary to take our rightful place as a powerful national lobby in the panorama of the American political electorate.