THERE AREN’T ANY EXPERTS ABOUT WAR WHO HAVE NEVER BEEN TO THE BATTLE FIELD

I did my first advocacy as soon as I left my mother’s womb and squalled to let the world know I was here and had needs independent of my mother’s needs. I am still at it today. I am 58 now still trying to advocate for my independence and rights as an individual. I guess I will be until the day I die.

I also try to advocate with my fellow sojourners who like me are on a pathway of recovery, but I find my hope dying day by day. I am not losing hope about our recovery. I am losing hope that we will ever be heard by the decision makers.

Oh they pretend to listen. Lip service is given to what is called person-centered services. I receive some of those person-centered services. I have family members who receive some of those person-centered services. I talk to others who receive those person-centered services. Few of the services are person-centered. Few of us even feel like we are seen as persons by the folks and organizations providing the services.

Don’t tell me about your satisfaction surveys. We tell you want we think you want to hear even on surveys we don’t have to put our names on. You have taught us to. We are as compliant as any well trained animal.

I went to a meeting here in NC the other week were the lady brought a plan for family and consumers to approve which was not even finished. Briefly went over a few parts of it. Folks ate pizza. The plan was approved. Everybody was happy. The organization will claim they met the requirements of the law I am sure and they may have because I am not a lawyer, but I can assure you it did not meet the test of truly getting input from that group. I know the difference.

MY HOPE IS DYING DAY BY DAY because we are not listened to in real ways that matter and change the way services are provided. The experts are those of us with the illness, our family and loved ones, and the frontline workers. Who is listened to as experts? The folks with $1,000.00 briefcases who have consulting firms. Anybody can form a corporation for a few hundred dollars and become a consultant, but it takes years of pain to learn enough to be called an expert about recovery. There aren’t any experts about war who have never been to the battle field and there are no experts about recovery who have not either in recovery or lived with a person recovering or worked shoulder to shoulder with them. It is that simple folks so start listening to the real experts and then doing what they say.

You can reach me directly at [email protected]

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