Leslie's Advocacy Journey |
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In January we asked Leslie Carpenter to share with us, her experience of advocating for an SMI platform in Iowa during the 2020 democratic primary. We have turned her words in to a 3-part series, we hope you enjoy her story just as much as we do. |
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Now, many have asked us, but what if the candidates that devise plans you like are not the person that becomes the next President? Well, to be frank, that wasn’t truly the main reason for us dedicating so much time, energy and effort during this pre-caucus season. Instead, we understood that we would have the unique opportunity of meeting and advocating with all these candidates over the course of the season while they were here working for our votes in the “First In The Nation” caucus. And, most of them already hold positions in our federal, state or local governments, and most would in the future as well. Our goal has been to take advantage of our ability to meet them, speak with them and to advocate, on behalf of the advocates from all over the country, and more importantly, on behalf of the 11.9 million people in our country living with serious brain disorders. If we have been effective, we will now have many leaders in our country with a clearer understanding of the crisis, and the steps we need to take to help fix the broken “treatment” system.
We understand that for many advocates, we are not getting things done fast enough. We also know that grass roots advocacy takes a huge amount of time. However, I believe that we have educated these candidates, grabbed their hearts with our son’s story and our persistent advocacy, on behalf of so many more people with SMI than just our son. I believe that many will follow through with working on legislation in the future, and that we will, hopefully, see some changes in the future that will benefit people with serious brain disorders.
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I would be remiss if I didn’t share that much of our advocacy for people with serious brain disorders has been informed by many tremendous advocates who have worked for many decades doing this work, and the books that they have written. We are grateful to Dj Jaffe, for his amazing policy-based book mentioned above. We are also grateful to Ron Powers, our friend and Pulitzer Prize winning author for his amazing book, “No One Cares About Crazy People.” We are grateful to Betsy Johnson, John Snook, Lisa Dailey, and Michael Gray with the Treatment Advocacy Center for all their help and advocacy leadership. And finally, we are grateful to the many advocates across the country who have educated us and soothed our souls with their touching social media posts: Teresa Pasquini, Laura Pagliano, Janet Hays, Linda Harris Mimms, Lauren Rettagliata, Kathy Day, and so many more. We continue to learn more every day and are grateful for this as well.
For anyone out there who has not begun to advocate yet, due to the current status of your loved one or your illness, please know that we were there once as well. We grant you grace to do what you need to do for now and know that so many others are working on your behalf. We didn’t know exactly how to start, or even what policies to recommend. We just started by telling of our son’s story and educating people about how broken the system is. And if that is where you start, that’s wonderful. These candidates are listening to everyone who speaks with them, and the more that they hear our stories, the better.
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I do recommend trying to provide specific solutions, though, whenever you can. Most legislators and leaders want to help, but many do not know exactly what to do. They are eager for solutions and often very willing to do what they can to help to put them in place. By combining specific stories with substantive policy, we believe anyone can be effective advocates and can help to improve the situation for people with serious brain disorders. We hope that over the course of the months between now and November, many more will be working to advocate with all these candidates to advocate with them as they visit your states as they campaign. Please consider getting involved, attending events and helping us to motivate them to prioritize fixing the very broken “treatment” system for people with serious brain disorders. The more people they hear from, the better!
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This is not a fight that can be done alone, we couldn't do it without your support. Please considering donating today. |
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