Shattering Silence While Rocking the Boat
Jan 21, 2017 — I want to express my heartfelt gratitude to all who signed our petition and joined the families and advocates of the 4% in our campaign to get real and #GetSerious about mental illness. We have started a conversation and we will keep it going. For now, we will use this petition site to communicate while we organize. We hope to soon share information on where we can unite the families and advocates of the 4%.
I have heard that we are "rocking the boat" which is a good thing because sometimes it feels like the system is still rearranging the deck chairs while the ship is going down. How many times have we heard families and the advocates of the 4% talk about how they are drowning? How many support groups have we been in where we hear a mother, father, sibling, friend or partner describe the torture of being forced to watch their loved one drowning in the mental illness system of luck and heroics? We are tired of watching our families die when we should be using all forms of life saving measures available.
These are the questions that must be answered by NAMI, the Mental Health Association, SAMHSA, CMS, Disability Rights orgs, human rights orgs, civil rights orgs and all health organization who claim to speak for us. They do not. We are the voices of the 10 million, the 4%. We will speak for our families. We will not be silent any longer. We will be respectfully calling out injustice, inequity, inhumanity and discrimination against our families. We welcome and invite others to join us.
While the systems that impact our families, our children and our communities are being integrated, redesigned and transformed, we are being tokenized and marginalized. We are being “othered” and shunned all in the name of inclusion. The “Nothing About Us Without Us” “mental health” mantra doesn’t apply to our adult children or our families because too many are locked up out of sight and out of mind, literally. But, we are “us” too and we refuse to be left out of any system conversations that are discussing how our loved ones will live and die.
I started this petition in order to have a real national conversation about families like mine, sons like mine, and the system’s role in silencing our voices. Because my son was too sick to play the system game, he has been locked away in psychiatric facilities or solitary jail cells for the majority of the past 15 years. So I became Danny’s voice and our family voice on local, state and national stages.
For those who say that my son should speak for himself, I agree. But for now he is mute. He was not born mute. However, he has been muted by a system that still supports failing and jailing over help and hope for those who lack the capacity to self-direct their medically necessary treatment and care.
While currently, I have lost the ability to physically hug my son, I do hear his voice at least twice a day when he calls me. He tells me he loves me. He tells me he is sorry for being so sick. He tells me he misses his dad and I and our home. He misses his sister, his dog, his friends, and his own bed. We love and miss him too. So, for now, we are his voice in system change. We are his “us.”
We are grateful to Pete Earley for sharing our "open letter" and video on his blog http://www.peteearley.com/blog/ and for respecting our voice. He has also shared NAMI’s response to our letter. As the conversation continues, I hope that we will not be seen as “angry activists” or “critics” because we are really much more. We are partners in care.
We will be sharing the NAMI response in a future update, along with our rebuttals. Please share this petition, tweet about it, talk about it and help us continue #ShatteringSilence about serious mental illness.
Let's keep rocking the boat, together…Teresa
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