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    Originally posted by Patricia:


    We are happy to work with everyone on this ... message, plans, etc.

    Ready to Roll!

    Persist ... in Hope,
    Patricia
    Hi Patricia, we are so happy to see you on board!

    Suzanne
    Suzanne

    Comment


      [QUOTE]Originally posted by toots kazoo:

      One More Idea, perhaps as part of the "take away" packets:

      For each SCI victim who attends, a photo and explanation of the effort it took for that person to participate, such as:
      [LIST]+ Taking time off from work;
      + Enlisting help of caregiver;
      + How expenses were covered;
      + Time and expense to take care of accessibility details for travel (plane, hotel, transportation, etc.);
      + Equipment, supplies necessary to pack;
      + If traveling without caregiver, help needed at both ends of the journey;
      QUOTE]

      Marilyn, great idea! Expose without reservation SCI daily lives to the public, to the media.

      Suzanne
      Suzanne

      Comment


        Originally posted by Clipper:

        Attached is a sample banner. This proof was made before we changed the wording, so obviously it'll be different.
        Clipper,

        Your work is way above the top!!

        Suzanne
        Suzanne

        Comment


          United should not be first word of Banner

          There a millions of United bla bla blas

          We need SCI to have exposure, not just another united group.

          We also need a gimmick

          Like taking all the bandaids like wheelchairs, cathing supplies, reachers, braces, etc and throw them in a fake fire.

          Comment


            Originally posted by LetsGo:


            1. Another question that I have is how are you planning on meeting with Members who do not support your views? As a former Senate staff member, calling them and just asking to meet with them will not do it.

            2. It's great that the CRPF is helping. However, it is my experience that if organizations like CRPF or The Miami Project take the lead in this, the feel of the event and what's accomplished will be very different from an organic, grassroots movement.

            3. There is something very beautiful in the grassroots movement that can't fully be explained unless you have been a part of it. I can say this from experience from being part of one as well as the understanding of working for an international non-profit and what there agendas are.

            4. The CRPF agenda is nice. It will serve its purpose and inform members about paralysis and the need for increased money. But do you want more?

            5. Do you want a movement that also feeds the soul? That heals wounds? That inspires greatness? That empowers and leaves a lasting impression and emotional charge with you for months after it is over with?

            If so, than do more than just a nice agenda. Maybe it would be rolling in front of the White House with picket signs. Nothing disorderly or protest '60s style like but something more.

            You can do more than many organizations can because they are limited by how a professional group must behave and act in professional Washington. Please know that I am not calling you unprofessional. But you can bring to the movement a face. A picture. An energy that can't happen by just meeting individually with Members.

            I really believe that what is most important is to get to see Members who oppose you and to get media attention. If the media grabs it, they can show the national public what life is like paralyzed. They can mobilize the general public for you in ways that meeting with Members can't.

            6. You can accomplish everyone's goals here. Think big. Dream and reach for the sky. It's yours. It is the idealists who have thrown caution to the wind that has advanced mankind in leaps and bounds faster than people following conventional behavior. You are the pioneers who are changing the world for the better and making it easier for those who become paralyzed after you.

            There are two quotes that I always carry with me:

            "No pessimists ever discovered the secret of the stars, or sailed to an uncharted land, or opened a new heaven to the human spirit" Helen Keller

            and

            "The difference between waht we do, and what we are capable of doing, would solve most of the world's problems." Gandhi
            LetsGo,

            I like your charm in writing! In this piece, you have once again charmed us with six very good points. In particular, with respect to points 5 & 6, please pay close attention to our moves here, do continue to let us know what exactly we are still lacking and tell us specifically what we should do. Thank you so much in advance!

            I do enjoying reading and disgesting the two quotes...

            Suzanne
            Suzanne

            Comment


              Originally posted by LetsGo:

              I am curious to know how if you are still planning on trying to get media attention? If so, how are you going to get it? Sending out a press release to say you are meeting with various Members of Congress will not get you an press. There has to be some form of "gimmick" or spark to make your meetings stand out from everyone else's.

              It is the idealists who have thrown caution to the wind that has advanced mankind in leaps and bounds faster than people following conventional behavior. You are the pioneers who are changing the world for the better and making it easier for those who become paralyzed after you.
              I do agree....In order to get media attention we need at least one "Shock and Awe" event, like putting together a display of a bunch of equipment and supplies typically used by sci and burning them in a mock sea of flames....or something like that.

              LetsGo is right....every day many groups meet with legislators, but what we want most is media attention. You can only get media coverage if you do something out of the ordinary, unpredictable [img]/forum/images/smilies/biggrin.gif[/img]

              ~ Choices Are The Hinges Of Destiny ~

              Comment


                Great idea Marilyn! When I start assembling materials, I'll contact each particpant to include this info in the bios.

                Bob - The banner language has been set, pending my discussion with the company regarding font size/visibility. We could spend the next 10 years debating the wording.

                Also, we don't need a gimmick. With the CRPF behind us, and Dr. Young and others possibly speaking, we'll have good stuff to pitch to the media. Stunts and over-the-top stuff make people look less credible. That's also why it's a good idea to leave politics aside and march as a united people. I'm so happy, for example, to have Kap's support.

                So, please don't think we need a stunt to get media attention. Media will be coming based on the initial press release, with no knowledge or expectation of a mock fire. They will cover the event, but gimmicks turn off reporters. Trust me on this.

                Comment


                  Originally posted by Curt Leatherbee:


                  I suggest everyone dress nicely, Men in Suits and ties and Woman in dresses and all be well groomed and look professional. I think we will get the best results this way and make the largest Impact.

                  I do like Suzannes suggestion for our slogan, I think the two fold approach could work.
                  Curt, usually when I see any petition around the world on the TV, people are wearing T-shirts and jeans. If we don't impose a dress code this time, my preference must be jeans and runners as we need to walk for miles, I suppose.

                  If suits and dresses are the dress code for this MARCH, we all must hit the picture of the public eyes!

                  I am so pleased to learn that you like the slogans, but I just heard that BigB wanted to change the word "UNITED". Let's discuss further!

                  Suzanne

                  [This message was edited by Suzanne Poon on 01-24-05 at 06:34 PM.]
                  Suzanne

                  Comment


                    Hi Everyone,

                    Just had a long chat with travel/legislative person. Some comments -

                    Easter is March 27th: The two weeks before and after are Spring Break and thus time for travel to Washington for many, many schools. Most hotels are already sold out, especially the more reasonable ones. June becomes Senior Class Trips.

                    Spring is heavy from March 13 through the end of June. Best possibilities would be 4/16 - 5/1 and May 24-25. Still high rate, but a better shot at getting rooms.

                    Tuesday through Thursday are always the best days to catch legislators.

                    The best possibility for travel is via Metro as accessible coaches are expensive and only can accommodate 2-4 chairs.

                    To get a large number of accessible rooms, including some with roll-in showers, will probably take using a cluster of hotels.

                    Need to look at combining people in ways that get at least ten rooms per hotel to be eligible for group rates - which saves a lot!

                    Two possibilities that have hotels within a block or so of each other AND are within a block of the Metro are:
                    Crystal City (just outside of the city) with a Hyatt, Hilton, Sheraton, and Marriott Gateway.
                    Metro Center (in the city) with a Hyatt, Hilton, and Marriott, all of which are new and very large.

                    Would also have some bargaining power in one or more of the places if we wanted to schedule a lunch or dinner. (Which I think would be very good. A couple of meals would give a chance to get acquainted and get 'on message' and report in on experiences. Plus we'd make sure that Wise gave an update!)

                    Would be happy to work with us on securing rooms in a tight market - or even doing some exploratory contacts. Would need to know approximately how many people (roomwise- count families as one room), approximately how many accessible rooms, and how many fully accesible rooms.)

                    Need to add one very honest response - was told that Fall is the very best time if you want reasonable room rates and useful time with your legislators. In Spring there are so many groups that want to see them that they are whisking people in and out like a revolving door and not really listening.

                    Fall also would give time to really sharpen a message, prepare materials, and write lots of letters to legislators. Worth considering?

                    Very to nice to have such knowledgeable friends, don't you think?

                    First thoughts. Questions? Comments?

                    Persist ... in Hope,

                    Patricia

                    Comment


                      Originally posted by Clipper:

                      So, please don't think we need a stunt to get media attention. Media will be coming based on the initial press release, with no knowledge or expectation of a mock fire. They will cover the event, but gimmicks turn off reporters. Trust me on this.
                      Clipper, I know there is a fine line between turning off reporters and using something out of the ordinary to get media coverage.

                      Often what happens is that reporters come and do interviews, but none of it gets in the media if there isn't a hook.

                      Not sure why people keep bringing up politics, since there has not been any mention of politics from any of the organizers. This is solely about visibility in numbers enough to boost acceptance of the CRPA.

                      If we do want to model after the AIDS movement like we've always said, a gimmick like possibly laying out a huge purple ribbon on the lawn, or the outlines of a wheelchair with a line through it, should be up for consideration and discussion.

                      ~ Choices Are The Hinges Of Destiny ~

                      Comment


                        Awhile back the idea popped up of coordinating a Rally in Washington with the next Neurotrauma Conference scheduled there in November. At the risk of dissipating the enormous amount of energy now driving the Rally idea, this date change seems worth considering in light of what Patricia reports.

                        Comment


                          Do it now and do it again later. You may not catch this wave again

                          and next time CR foundation will think twice about getting involved or any other organization that already heard of our plan

                          Comment


                            Originally posted by BigB:

                            Do it now and do it again later. You may not catch this wave again

                            and next time CR foundation will think twice about getting involved or any other organization that already heard of our plan
                            Agreed!

                            Suzanne
                            Suzanne

                            Comment


                              I think showing wheelchairs and different equipment we use is a good idea. Many people I meet have no idea what all SCI entails. In fact, when I have explained that I have to cath they are shocked. People that are not in the medical profession and have not had experience with someone that has a SCI don't realize it is more than just your limbs not moving! I think we need to get the word out what a SCI life is truly like. With the publicity we will have I think it is a great opportunity.

                              Comment


                                Clipper - your experience, knowledge and PR skills are such a valuable asset to this movement. But I really question whether a press release will do the trick and this is why I am pushing the point so much. I also do PR work in the non-profit arena. I am pushing to get our research and human interest stories published all the time and a simple release, in my opinion, is not effective by itself.

                                As you know, the Washington Post, CNN and the NY Times get press releases all the time. What is the catch for them to write about it vs all the other people vying for attention? I am sorry but just because you are paralyzed and lobbying Members of Congress will not get it in my opinion. I can be wrong. It is just my opinion and I do value your knowledge and experience.

                                The rational for the "gimmick" is three fold:
                                1. To get the press there.
                                2. To create a human, emotional moment for the participants that moves beyond a nice agenda and creates passion, healing and inspiration.
                                3. To make people realize you are not going away or backing down until you get your rights.

                                I can only imagine how liberating it would be to have 100 paralyzed people or more in a circle and be able to throw cathethers and wheelchairs in the garbage. The healing and release would be beautiful.

                                Maybe I haven't done a very good job at explaining how I visualize this march taking place. I have said that everyone's goals can be accomplished here.

                                During the day, you go to the Hill and lobby Members of Congress. You discuss the CRPA, you talk to them about what life is like being paralyzed. You talk about the need for increased funding.

                                The gimmick then (and that was a very poor choice of word I used)brings the press to you but more importantly creates the emotional and healing bonds for the group. This is where the beauty of the grassroots movement sets in.

                                Looking back at the history of the gay movement, we had this very debate - those that wanted to push the envelop vs those who wanted to work behind the scenes. It was a very lively and heated debate with the identical thoughts that you are now discussing that we had. What we now know is that both sides were right!

                                It took those people who worked behind the scenes to get the nuts and bolts of the legistion written and passed. To form the coalitions.

                                And - it took the other people to get the media attention placed on us for the country to see how we were being discriminated against. The more graphic the images the media showed, the less of shock value it became and the more mainstream we became because people started seeing us for who we are.

                                Also, the people who were pushing the envelop also served an incredible function against our opponents in Congress. Those Members realized that we would not back down until we get our rights.

                                You can lobby your life away and it will do you NO good if Congress doesn't see you as a group of people who refuse to be pushed around.

                                The SCI movement doesn't need to be radical. I am using stronger words than maybe necessary but that is to motivate you guys into action. That is to help you see more in yourselves than maybe you realize.

                                You need increased funding - that is taken care during the lobbying. You need media attention so American begins to see you and realize how devastating paralysis is. It is only in the past few years that you have seen paralyzed people in commericals and now they are in TV shows. Joan of Arcadia is an incredible show for your community.

                                Lastly, Suzanne you said tell us about what we need to do for points 5 and 6. I would love to tell you but this is where magic happens and it is for you to discover what magic you want to create for yourselves. I won't take this gift away from you - it is too precious.

                                If I sound corny, so be it. I just know how amazing these movements can be. Don't be afraid to think outside of the box as well as inside. Do you want a movement that feeds your soul? Only you can determine if lobbying feeds your soul or can you take this opportunity to do something more?

                                Remember, the media and Congress don't have to know everything you are doing or be invited to it all. Think and dream about what it is you want to have happen for you. Once you've dreamt it - it is already created and just waiting for you to put it into motion.

                                Comment

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