Thanks so much for this important article Sera. In addition to Emotional CPR (www.emotional-cpr.org) there is also Intentional Peer Support (www.intentionalpeersupport.org). Both teach people to tap in to our humanity and better connect with people in distress, thus avoiding entrapment in the “mental health” system.
Thanks for writing this Susan. What makes the Alternatives Conference great is the people who come to it, so I hope that folks with all kinds of diverse perspectives can find there way to Orlando next month. Look forward to seeing many of my comrades!
I have to admit I’m very confused at your accusation that we are advocating against your kids. If the system is working for her that’s great, there are plenty of hospitals and plenty of places where she can get medication. More power to you and her, go get those supports.
The problem is that for the many families and people who are seeking an alternative to that system there are not very many places to turn. We never get phone calls asking us for help to find a hospital or to find medication, we constantly get calls asking us for help to find alternatives and peer-run supports.
Can you give some specifics on what you mean by advocating against your kids? Because I certainly don’t feel I’m doing that and don’t want to be doing that.
I too am glad to have your voice in this, I hope we can learn from each other. Having a respectful dialogue about really intense issues can be difficult, but it seems everybody is doing that. I believe that I have a lot to learn from family members like yourself, so it doesn’t have to be a “fight.” I’m sorry you had a bad experience with peer-run programs, this is unusual for me to hear as I’m usually hearing from families that are having a terrible time in the traditional system and are starving for alternatives. I hope you were able to give them constructive feedback, as I have found peer-run organizations to be much more responsive overall than the hospitals to feedback. I agree with you that our peer-run programs need to be able to work with everybody, including the most in need.
I would contend, however, that, overall, given the minimal amount of funding peer-run programming receives when compared to the traditional system, we are doing an amazing job of helping people in the most dire of circumstances turn their lives arounds. The problem is a lack of funding and infrastructure to support these organizations, and what little funding there is would take a huge hit if the Murphy Bill were to be passed.
You say that the hospitals and medication are the only things that work for your daughter. I wonder if you could explain what you mean by “working?” Because it sounds like you have a lot of pain around feelings of wanting her to be able to have children, that the only support system she has is her family, etc. I think this may a fundamental difference in our approaches, where the peer movement sees what “works” as leading to more independence, friends, a social life, a fulfilling job, and having a family of their own, compared to the traditional system’s definition of what “works” that often means more dependence on the system and parents, and while they may “stay out of trouble,” they are not able to achieve a whole lot beyond that.
The last thing I will say for now is that I personally have had three experiences with what is called “mania.” I agree with you that these situations are very difficult for the people surrounding to handle. However, I would argue that these experiences are also deeply meaningful, and one reason that they keep reoccurring is because the person and people around them are so busy trying to suppress them that they never learn about what the root causes are. The root causes are often trauma, but they can also just signify dramatic life learning, spiritual growth, and change. So if the people surrounding the person going through a “manic episode” are skilled enough in approaches like Emotional CPR and Intentional Peer Support (which anybody can learn), and if there are enough supporters, it is possible to help people through even the most difficult of mind states with the added benefit of learning and growth for everyone involved, and lessening the likelihood that it will happen again.
Again, thank you for being involved in the dialogue.
Thank you thank you thank you for sharing this very important piece – your story. You could have easily just led your life with your beautiful family, but you decided that it was too important to be silent. It is a privilege to know you.
Personally I don’t agree with profiling and honestly your comments frighten me, I’m sorry you feel that way. That is exactly what they did in Nazi Germany and I’m afraid that is the direction we are heading… There is a better approach.
So powerful Steven, thank you!
Oryx
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Rock on soul sister! Thank you so much for sharing this important epiphany. You are impacting many. Onward in the struggle,
Oryx
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Thanks so much for this important article Sera. In addition to Emotional CPR (www.emotional-cpr.org) there is also Intentional Peer Support (www.intentionalpeersupport.org). Both teach people to tap in to our humanity and better connect with people in distress, thus avoiding entrapment in the “mental health” system.
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Thanks for writing this Susan. What makes the Alternatives Conference great is the people who come to it, so I hope that folks with all kinds of diverse perspectives can find there way to Orlando next month. Look forward to seeing many of my comrades!
Oryx
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Thank you for sharing your powerful story Ute.
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Great letter Leah, these are just the types of letters we need to be sending to our legislators at this time.
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Hi again Kate:
I have to admit I’m very confused at your accusation that we are advocating against your kids. If the system is working for her that’s great, there are plenty of hospitals and plenty of places where she can get medication. More power to you and her, go get those supports.
The problem is that for the many families and people who are seeking an alternative to that system there are not very many places to turn. We never get phone calls asking us for help to find a hospital or to find medication, we constantly get calls asking us for help to find alternatives and peer-run supports.
Can you give some specifics on what you mean by advocating against your kids? Because I certainly don’t feel I’m doing that and don’t want to be doing that.
Thanks.
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Hi Kate:
I too am glad to have your voice in this, I hope we can learn from each other. Having a respectful dialogue about really intense issues can be difficult, but it seems everybody is doing that. I believe that I have a lot to learn from family members like yourself, so it doesn’t have to be a “fight.” I’m sorry you had a bad experience with peer-run programs, this is unusual for me to hear as I’m usually hearing from families that are having a terrible time in the traditional system and are starving for alternatives. I hope you were able to give them constructive feedback, as I have found peer-run organizations to be much more responsive overall than the hospitals to feedback. I agree with you that our peer-run programs need to be able to work with everybody, including the most in need.
I would contend, however, that, overall, given the minimal amount of funding peer-run programming receives when compared to the traditional system, we are doing an amazing job of helping people in the most dire of circumstances turn their lives arounds. The problem is a lack of funding and infrastructure to support these organizations, and what little funding there is would take a huge hit if the Murphy Bill were to be passed.
You say that the hospitals and medication are the only things that work for your daughter. I wonder if you could explain what you mean by “working?” Because it sounds like you have a lot of pain around feelings of wanting her to be able to have children, that the only support system she has is her family, etc. I think this may a fundamental difference in our approaches, where the peer movement sees what “works” as leading to more independence, friends, a social life, a fulfilling job, and having a family of their own, compared to the traditional system’s definition of what “works” that often means more dependence on the system and parents, and while they may “stay out of trouble,” they are not able to achieve a whole lot beyond that.
The last thing I will say for now is that I personally have had three experiences with what is called “mania.” I agree with you that these situations are very difficult for the people surrounding to handle. However, I would argue that these experiences are also deeply meaningful, and one reason that they keep reoccurring is because the person and people around them are so busy trying to suppress them that they never learn about what the root causes are. The root causes are often trauma, but they can also just signify dramatic life learning, spiritual growth, and change. So if the people surrounding the person going through a “manic episode” are skilled enough in approaches like Emotional CPR and Intentional Peer Support (which anybody can learn), and if there are enough supporters, it is possible to help people through even the most difficult of mind states with the added benefit of learning and growth for everyone involved, and lessening the likelihood that it will happen again.
Again, thank you for being involved in the dialogue.
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Hi Joe:
If you go to the National Empowerment Center’s website at http://www.power2u.org/consumerrun-statewide.html there is a listing of statewide peer-run organizations. The Self-Help Clearinghouse also compiled a more detailed listing of peer-run organizations at http://cdsdirectory.org.
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PJ – This is a moving piece, thank you. We are lucky to have a growing quality and quantity of media thanks to people like you.
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Thank you thank you thank you for sharing this very important piece – your story. You could have easily just led your life with your beautiful family, but you decided that it was too important to be silent. It is a privilege to know you.
Oryx
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This is a beautiful piece Lauren, thank you for writing it.
Oryx
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Thanks Jen, it means a lot that you took the time to make such a thoughtful post and share such valuable resources.
Oryx
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Thanks Bruce, very well said!
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Rock on! We’d love to buy a bunch from you and add them to our online store at NEC.
Oryx
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Thanks for your post, I appreciate you sharing your thoughts and resources.
Oryx
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Thanks Dan!
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Thanks Pam, much appreciated. Power to the people!
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Hi Robert:
Personally I don’t agree with profiling and honestly your comments frighten me, I’m sorry you feel that way. That is exactly what they did in Nazi Germany and I’m afraid that is the direction we are heading… There is a better approach.
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Thanks Ron!
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Much appreciated Dorothy, thanks for taking the time to comment.
Oryx
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Well said!
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Thanks Diana!
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Excellent points Steve, thanks for writing.
Oryx
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