A GUIDE FOR SLEEP ACTIVISTS

Wake Up America

Are You an Activist?

Most people can be very active in promoting a cause if they truly care about it. Effective activism usually requires being aggressive and pushy, refusing to take no for an answer, persistence, and quite frankly, a thick skin. In addition, an activist must realize that no matter how right the cause, how many people may be affected, and how much good can be done by Congressional action, progress will almost never occur spontaneously. There is always resistence to change. Some program or person is always threatened by change, and there is vast inertia. The only way to assure success is to push and push and push.

After a decade of advocating for the sleep community and a variety of sleep issues both locally and nationally, I have come to the conclusion that some people are simply natural-born, get-in-your-face activists. Other than understanding what they are advocating, they need very little motivating and can be relied upon to take the initiative. Most people are not-natural born activists, but the high moral ground of advocating what can be summarized as Sleep Goals 2000 generally substitutes for the thick skin of the natural. The final litmus test is how you feel after a "day on the Hill" or speaking out at a Town Hall Meeting, i.e. after good taste of grass roots advocacy. You should feel excited and energized even though you might be physically tired. You should feel that it was "fun," although serious. You should feel a sense of validation that you can make a difference.


Are You a Sleep Activist?

It appears that the time for sleep has come. Several exciting initiatives are on the table, and a number of organizations have mad a commitment to our goals. Therefore, if you are a sleep disorders patient or a sleep professional and want to carry out effective grass roots advocacy, you should ask yourself these questions:

   1. Do I really care about the field of sleep disorders medicine and research, and am I willing to do something to promote its success? Do I feel it is important to save the lives of undiagnosed obstructive sleep apnea patients and potential accident victims, to bring the benefits of our knowledge to the millions and millions of others who are not receiving any benefit, and to generally improve the climate for the diagnosis and treatment of sleep disorders?

   2. Do I find grass roots advocacy activity for sleep meaningful? Is it enjoyable? Is it fun? If it is unpleasant or uncomfortable, don't do it.

   3. Do I have the ability, the time, and the commitment to follow through, and to persist?

If you cannot answer "Yes" to these questions, you must do at least one thing: Make every effort to identify other people who have activist potential, and to empower them to become sleep activists. Never,never,never discourage a patient, a technician, a doctor, or anyone who is carrying out grass roots advocacy for sleep. We are not concerned about protocol and politeness. We are concerned about getting the job done, and we are concerned that volunteers who are carrying out grass roots advocacy for our field without pay, and often without recognition, should, at the very least, receive as much of our gratitude and support as possible.

How to be a Sleep Activist

Sidenote: For 40 years the students of Stanford Sleep and Dreams have been engaged as sleep activists under the tutelage of Dr. Dement. To be a part of that community and be an activist yourself, get involved at the new Stanford Sleep and Dreams website.

Phase One:  Get acquainted with the person who represents your Congressional District in the House of Representatives:

Step One: Find out who this person is. It has been very distressing to me to discover that more than 90% of the sleep community have no idea who is their elected Congressperson in the House of Representatives. There are several ways to find out: First, call the registrar of Voters in your area, tell them your home address, and they will tell you who represents you in the Congress. You should also find out the address and phone number of the District office or offices. You may also use the online methods on our "Contacting Congress" page.

Believe it or not, I have encountered people who do not know the difference between a Representative and a Senator.  Be sure that no one is confused about this. Most of us will know the names of our two Senators because we know which State we live in. The boundaries of Congressional districts can pose some difficulty because they are typically irregular. To exercise your enormous power as a constituent and a voter, you must know the Congressional District in which you reside, and you must know the name of the person who represents it. The boundaries of each Congressional District are adjusted so that each will contain approximately 550,000 citizens.

Step Two: Visit the District office or offices and get acquainted with the local staff. Learn their names and their specific roles, i.e., receptionist, scheduler, district manager, etc. Once you have become acquainted, develop and maintain a relationship. Invite local staff to visit your center, your laboratory, or whatever facility you are associated with. Educate them about sleep disorders and sleep deprivation, and send them clippings of accidents, information about sleep disorders, etc. every so often. Dropping in once a month would not be too often. Be sure they know you well, and the group or cause you support. When a Congressional District is geographically large, its Congressperson might maintain more than one office. For the sake of convenience, visit the office that is near your place of work or your home.

Step Three: Be absolutely certain you are on the mailing list to be informed of all Town Hall Meetings and other public appearances of your elected representative. Always attend Town Hall Meetings with as large a group of fellow patients, sleep professionals, and friends as possible. Someone should attent every Town Hall Meeting.

Step Four: Get acquainted with the Washington, D.C. staff by phone or mail; or if you live near Washington DC, in person. Which members of the D.C. staff are from your district or nearby? Do you have friends or acquaintances in common? Interests in common? Find out who, on the Washington, D.C. staff, are primarily responsible for health issues and for transportation safety issues. Send material to the Washington, D.C. office at regular intervals.

Step Five: Be absolutely sure that anyone who is going to Washington, D.C. or to any destination nearby, i.e., Baltimore, visits their Congressional office. Tell them to call for an appointment as far in advance as possible, and to tell the staff person the issue to be discussed.

Step Six: Educate your elected representative and his or her staff about key sleep issues. The Final Report of the National Commission is a good place to start. To obtain a copy of the report, Wake Up America: A National Sleep Alert, call 1-800-222-2225. There are numerous fact sheets distributed by the American Sleep Disorders Association, the National Sleep Foundation, the National Center on Sleep Disorders Research, and other sleep organizations. You can call Wake Up America at 650-725-6484, and we will send you materials. Make sure your representative and his or her staff really are educated. Ask them questions.

Step Seven: If you share your Congressperson's positions on various other issues, or at least enough of them to be comfortable, then do what you can to help him or her. Host a fund raiser. March in a parade. Work in a campaign. In this way, you can gain his or her trust and respect, and your information and opinions will be valued and frequently sought. But remember! Sleep is bipartisan.

Phase Two:  Build up a District cohort of sleep activists. Participation in public policy formulation and implementation on behalf of sleep issues should be a moral imperative for all members of the sleep community.

Step One: Identify additional activists. Constantly search for mutual acquaintances and recruit patients and other professionals to join in the grass roots advocacy effort. Numbers count!

Step Two: Empower your local AWAKE group or groups to carry out grass roots advocacy.

Step Three: Involve other patient groups, i.e., restless legs patients or narcolepsy patients.

Step Four: Involve your friends, colleagues, relatives, and family members.

Phase Three:  Be ready when your member's support is needed for a specific initiative or piece of legislation.

Step One: Familiarize yourself with the legislation, initiative, or issue.

Step Two: Be able to tell your member and other grass roots activists why the legislation is important and should be supported. Prepare materials that you can send to your grass roots activists.

Step Three: This is the moment when all other activists and semi-activists can do something important and specific: i.e., write letters, make phone calls, send faxes, send e-mail supporting the specific legislation.

Admonition:  More often than not, grass roots advocates for sleep will be concerned about something that Congress has not done. This was the case for the Great American Sleepwalk. There is still no specific legislation or appropriation that will effectively activate the National Center on Sleep Disorders Research. We must therefore, educate the Congress and make them aware of the findings of the National Commission and its recommendations. We must demand that something be done. We must make suggestions to our legislators about actions they can take.

Meetings

What follows applies to all members of Congress, both Senators and Representatives. I emphasize the House of Respresentatives because Members of the House are usually in closer touch with, and more accessible to, their constituents. Senators may be more or less accessible depending on specific friendships or family relationships, or on the size of the state. In states with small populations such as Alaska, Montana, Rhode Island, Vermont, New Hampshire and Oregon, Senators are probably as accessible as Representatives. In states with large populations, such as California, New York, Texas, Ohio, Illinois, and Pennsylvania, Senators are much less accessible.

No one is totally inaccessible. I and my Wake Up America colleagues have encountered and talked to Senators and Representatives by appointment, by chance encounter, for example, at the tram stations in the basement of the Capitol, at fund raisers, and various other situations. Rarely is anyone actually rejected. On the other hand, members of Congress are generally very busy abd extended discussion requires an appointment.

It must be absolutely clear to everyone that meetings with Congressional staff are imperative in order to have your message translated into action. A meeting with a Senator or Representative together with the key staff person is optimal. You or your group must also follow-up. What happened? What was your legislator able to do?

A Summit Meeting

A very effective and visable way to have an impact is to organize a "District Sleep Summit." The Georgia Sleep Summit in the 6th Congressional District represented by former Speaker Newt Gingrich can serve as a model. Susan Thomlinson, a sleep hero, approached the Pastor of her church, the Wildwood Baptist Church in Acworth, Georgia for permission to use the facilities on the evening of May 2, 1996. Fourteen thousand people, sleep professionals, sleep disorders patients, AWAKE members, Restless Legs support group members, narcolepsy support group members, etc. were notified and invited to attend the Georgia Sleep Summit! A news release was sent to 40-50 media contacts. Patients and accident victims had been selected to tell their stories. Several prominent sleep specialists were ready to make comments. Finally, Newt Gingrich and his staff were invited and urged to attend to learn about the problems of thousands of their constituents.

There are now a cadre of activists around the United States who have organized such events, who are eager to help and to advise. Among them are Frankie Roman, Susan Thomlinson, Mary O'Brien, Kathleen Chittenden and William Dement. Vendors, local groups, hospitals, and sleep centers are usually delighted to sponsor such a meeting, and to provide refreshments. Ther can be exhibits, literature, the whole ball of wax.

Fundraising events for your elected Representative or the opposition candidate are another effective forum for the delivery of our messages. These can be held anywhere, at one's home, at a business, at a sleep center. At the House of Representatives level, $50 a person to attend a reception and meet the candidate is usually adequate.

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