Advocacy & Activism for Serious Brain Disorders
What to do when you don't know what to do...
By Catherine J. Rippee-Hanson
Numerous people have asked me what the differences are between advocacy and activism. In considering why it matters - I have met many caring people who want to help effect change but do not always know what to do or who may have doubts that they have what it takes to be an advocate or an activist.
To begin with - anyone who argues the case of another, speaks out and brings awareness of another or a group is an Advocate. A person who speaks in support of something. A person who supports others to make their voices heard, to encourage support for something. Advocating is to encourage support for something, often that which is unjust, unfair, or lacking empathy from society in general.
Often, the terms advocacy and activism are used interchangeably, though they have distinct meanings. A person who advocates for another person or group is said to be an advocate. Advocacy can encompass a wide range of activities or issues but lobbying and legislation are more likely to be used by advocates as they represent a group.
You may think of boycotts or preferentially patronizing businesses, rallies, street marches, strikes, sit-ins, and hunger strikes as activism - and you would be right. But there are other forms of activism and ways to volunteer your voice to the efforts of other activists or advocates. Anyone can be either...since these actions often overlap, a lot of the information can be used by an activist or an advocate.
“AN ACTIVIST IS SOMEONE WHO CANNOT HELP BUT FIGHT FOR SOMETHING. THAT PERSON IS USUALLY NOT MOTIVATED BY A NEED FOR POWER, OR MONEY, OR FAME, BUT IN FACT DRIVEN SLIGHTLY MAD BY SOME INJUSTICE, SOME CRUELTY, SOME UNFAIRNESS – SO MUCH SO THAT HE OR SHE IS COMPELLED BY SOME INTERNAL MORAL ENGINE TO ACT TO MAKE IT BETTER.”
~ Eve Ensler ~
The purpose of any social activism is to bring about social change. You might be considered an activist if you are dedicated to the cause and working to bring change to society. Anyone who advocates for social change is an activist. Anyone who sees the need for change, has the desire to make improvements in society and devotes their time to doing something about it is an activist. Many advocates and activists for those with serious brain disorders are family members… trudging along a precariously winding road with no end in sight.
A person who is an activist is not afraid to express themselves however they feel. Activists are persistent, helpful and will take risks to help other people. They campaign for societal change. Some activists get involved in a cause due to personal experiences, while others get involved in a cause in support of an experience of someone else. One who fights for change whether in a representative or citizen capacity; especially, one who campaigns through campaigns for change. As an activist, a person makes deliberate efforts to bring about social and political change.
Activism does not always mean marching in the streets. An active participation through activism is the best method; however, there are different levels of activism: Discussing and writing; Creating awareness; Making use of legal and constitutional methods; Involving journaling and political connections to spread the news.
Activism, in a general sense, can be described as intentional action to bring about social change, political change, economic justice such as parity in healthcare. This action is in support of, or opposition to, one side of an often-controversial argument or subject.
The word “activism” is often used synonymously with protest or dissent, but activism can stem from any number of political orientations and take a wide range of forms, from writing letters to newspapers or politicians, political campaigning, e-mail campaigns, phone calls to representatives, giving public speeches, or even public awareness through the media.
The main difference between Activism and Advocating is that the Activism is an effort to promote, impede, or direct social, political, economic, or environmental change, or reform and an Advocate speaks out for those that cannot - or in some cases is a profession - in this sense is a professional in the field of law. In my lifetime, I have been both an advocate and an activist for a variety of causes. In my case, it comes naturally from my own protective personality for those who have less power than most to get justice.
Many groups often use social media to facilitate civic engagement and collective action. Getting involved in a cause you care about can be done by educating yourself on the issue, finding ways to get involved both in-person and online. Social Media Activism for Serious Brain Disorders is used frequently today.
There exist many different groups used to bring attention to movements in many different areas. Some are strictly meant for policy changes to laws that govern the available resources and avenues for help for those who suffer from SMI/SMB. Some are local and some are national. There are support groups for family members and caregivers as well on social media. Some focus on treatment... some on housing... some on peer support.
The National Shattering Silence Coalition (NSSC) covers many different area or points of Unity for all Advocates and Activists who are in the fight for reform of our Mental Healthcare concerning Serious Brain Disorders such as Schizophrenia, Bipolar and Schizoaffective Disorder. We all need to work together for those with serious brain disorders to speak for them… to advocate... and to act on our convictions in whatever way we can through activism. Imagine - for more than a moment - that we could finally be heard by joining together with ALL of our voices.
Shattering Silence for Serious Brain Disorders
The National Shattering Silence Coalition brings attention to the silent epidemic of untreated or inadequately treated serious brain disorders (SBD), commonly referred to as serious mental illnesses (SMI) in adults and serious emotional disturbances (SED) in children.
NSSC speaks out about federal, state, and local policies that impact those living with serious brain disorders, and advocates for change.
NSSC is an alliance of diverse individuals who are uniting to ensure that brain illness, health, and criminal justice systems count those with SBD, and their families in all federal, state, and local policy reforms.
My brother, Mark is totally blind (no eyes) has Schizophrenia or Schizoaffective w/Bipolar with Anosognosia (lack of insight) depending on different cursory examinations, and recently spent almost a whole year in the hospital for a shattered body after being hit by two cars on separate occasions because they keep dumping him back on the streets in our town without supervision or allowing the process of LPS Public Conservatorship to even begin... after 34 years.
Our family has been fighting for rights to have input or to help him get care, treatment, housing etc... to no avail so far. We have begged our County to act on his behalf and they are fully aware that he has been on the streets for 14 years. They just treat and release him... even when he is in clear danger.
My twin sister and I have been both advocates and activists in our pursuit of the needed changes in our society in addition to struggling through the status quo on a far more personal level for our brother, Mark who this blog is dedicated to…
The following first-person account below is from my twin sister, Linda (Rippee) Privatte who explains when she first realized she had gone from being an advocate to an activist. Her realization came while giving her first speech to our Solano County Board of Supervisors unknowingly on the very day that the county’s Mental Health workers were being lauded by the council. -. An awkward and brave endeavor considering she had to follow the accolades that were being handed out while knowing that our brother was in full-blown psychosis left to the streets without any treatment or services in the same county.
The Day They Turned me into an Activist
By Linda (Rippee) Privatte
My twin sister, Catherine J. Rippee-Hanson and I have been our brother’s advocates since 1987. Our family went through 20 years of caring for Mark without the treatment he needed from the Mental Health system, without any guidance from Mental Health professionals, without any training for the family or medication for Mark. In 2007 his Serious Mental/Brain Illness had progressed to the point that we could no longer control his actions or care for his daily needs without family members being injured.
We could no longer maintain housing options for him due to his psychotic episodes. He was evicted and became homeless. Our family had no legal authority to get him the treatment he so desperately required. We knew we would always remain his advocates for life - but that would prove to not be enough. The last 14 years a fresh new hell within a hell for Mark and our family. Fear, frustration, and despair led us to writing several hundred emails to County officials and Mental Health officials. We were not getting responses. This is my story of the day we knew we had to become SMI/SBD activists.
Three years ago, on April 13, 2018 - I sent this email to the Solano County Board of Supervisors, the Mental Health Advisory Board, Health and Social Services, and Behavioral Health departments. I had already sent hundreds to all County Agencies. After this email I began speaking publicly and I have not stopped telling my brother’s story…not until the end.
This is the unanswered letter that took me to the Solano County Board of Supervisors meeting and what made me realize that I had to become that SMI/SBD Advocate and Activist who speaks our truth loudly in the room.
[ I would like to comment as to what I have experienced on my journey to look for help for my brother. I was ignored, pacified, misled, and dismissed. I feel defeated, desperate, lost, and alone in my quest for needed assistance. You have done harm to my mental health and my family. At no time did I receive any guidance or how to navigate Solano County Mental Health Services, nor was I informed as to what your protocols were. Where are your family liaisons? Your system does not value the family’s input?
I contacted many agencies and officials trying to convince them that my brother IS the definition of “Gravely Disabled” and in need of a conservator based on his family’s situation and the fact that he has been homeless for over a decade. While I attempted to have patience, I was only told, “Thanks, we’re working on it.” By the way that was literally the only email response that I received back, except the one that said they had enough info so I could stop sending more. I took them at their word for a while. My brother was arrested once again during my current search for help and put in Solano County Jail. Vacaville PD confirmed he had been arrested 50 times in the last 11 years and at least as many times in the 2 prior decades.
Mark had only been 51/50’d one time in 11 years of interaction with the local police.
I was told by the county Liaison to the Mentally Ill that are homeless, “Don’t worry, we will either get an LPS Conservatorship or a Probate Conservatorship. She said she was his case worker along with APS. Now I only heard from this liaison 3 times on the phone. The 2nd time she called to say that APS had gone to talk to my brother in jail. APS thought my brother presented well when she spoke to him. He knew who the President was, and he knew where he was!
Meanwhile after waiting over two weeks to hear back from Liaison and leaving several messages she called me, and I point blank asked her if they had attempted to get a Public Conservator appointed in my brother’s case or not? Her answer was, “No, that didn’t go through. APS said he presented well.” WHAT? I called and found my brother. This was the first time since Feb. 6th that I had seen or talked to my brother. Now mind you, APS thinks he is okay to run his own life and I had just been told the Conservatorship will not happen. They will not pursue it.
Let me tell you what both my phone calls with my brother were like. He seemed thoughtful and caring at the beginning of our conversation. I always remind him first thing how much I love him and worry about him...” Why?” he asked confused. The first call would last 20 minutes, and these were the topics of conversation as he did all the talking. He told me he died in the jailhouse and several people got inside of him and brought him back to life. He told me that all his ten fingers had started spurting blood all over the jail. He told me he had been seeing a very bright Alien light in his head. He told me of people from his childhood friends were after him. (people he had not seen in 40-45 years.) He told me he worked for the FBI in Sacramento, carried guns, and he also said he worked for Homeland Security. He said when he had his accident the Military doctors came from Travis AFB and put things in his brain to control him. He then became very adamant that there was a very secret tunnel system under the city of Vacaville run by Travis AFB that has a giant fire as big as the town and he has been down there, and the fire reacts only to him. He said that when he is near it by the creek smoke is all around him and others think he started the fire by the green box. That was a 20-minute conversation with my brother that took place within an hour of APS telling me they are not pursuing a conservator for my brother, that he presented well enough.
Now the second phone call my brother made to me was asking me to get a hold of his younger sister and husband. His reason for being so desperate to talk to them was to warn them that a friend of theirs was working with Osama Bin Laden and had been chasing him around town and he gave my brother a sword that would prove it. This is not the first time the family has listened to him rant about Al Qaeda or Osama Bin Laden still chasing him. He then started talking in a very strange robot type voice telling me he is a soldier; I am a soldier.
I do not know what kind of evaluation was done on my brother and Solano County will provide no proof to the family that they have done their part. I am following my heart and my mind, and I will not relent. Why did 98% of everyone I contacted not even respond? If you responded or even just talked to me, I THANK-YOU from the bottom of my heart. If you did not respond or did nothing when you said you would, SHAME ON YOU for leaving desperate families in the dark and for giving no guidance through your broken mental health system and for being DISRESPECTFUL to families that are looking for a legal way to save a family member.
My brother is being put back out on the street corner on April 16th. BACS has no legal choice! He is 100% blind, massive brain damage, frontal lobe damage, and SMI…He IS gravely disabled…PLEASE I am begging any one of you to review his case! Please stop ignoring me! What am I doing wrong? Am I not articulate enough? Am I not explaining his history enough? Where is the compassion or the interest in making a difference?
The Mayor of Vacaville had the City Attorney tell me I needed to have the county appoint a Conservator to my brother. Great advice, right? I do not know how to make Solano County officials do what they are supposed to do. I do not even really know who oversees whom? Why are you not being straightforward with me? Tell me where in this MAZE of Mental Health Services do I go next?]
Linda (Rippee) Privatte
After this letter was written and I received no response, I attended a Solano County Mental Health Advisory board meeting to make a public comment for the first time in my life. My twin sister, Catherine had been an Activist throughout her lifetime on many issues. She had all the experience that I was going to need, but I would have to do this on my own and I was way out of my comfort zone. I would have to channel my twin sister because after all she was the warrior, and I was the diplomat.
Before I finished speaking, a voice came from the back of the room. She hollered out to me that I needed AB 1971, and that only legislative change would ever save my brother or others with Serious Mental Illness. When I finished my comments one Board member stood and said,” This woman has been given nothing but lip service from the county!”
I went to meet the woman from the back of the room that threw AB 1971 at me to find out more. She convinced me that she knew what she was talking about. You see, she had a seriously mentally ill son in my hometown that had been shot and killed by our local police. Another attendee approached me and told me that I really needed to go to the very next Solano County Board of Supervisors meeting - and so I did.
April 24th, 2018 Solano County Board of Supervisors meeting:
Linda (Rippee) Privatte, April 24th, 2018 Solano County Board of Supervisors meeting. The full video can be viewed here: https://solano.granicus.com/MediaPlayer.php?view_id=8&clip_id=1457
The first time I spoke publicly at the Solano County Board of Supervisors meeting was on April 24th, 2018. I promised publicly that day that I would continue to tell his story. I told them I would make sure they knew his name and I would be back to tell them the end of his story! My twin sister and I are keeping that promise, and his story has been taken to the County, State, and now the Federal levels.
I had never attended any city or county meeting before, let alone speak publicly. This would prove to be a most unexpected day.
It was a large hall, and it was at full capacity on that day. I was already shaking when I entered, and I found my way down to a seat near the podium. After I sat down, I remembered that I needed to fill out a comment card request and I had not picked up an agenda. As I crossed the room, I saw glimpses of faces that made my stomach drop. I immediately sat down and read the agenda. It was being announced that May would be Mental Health Awareness Month. There were close to 20 Solano Mental Health Officials in attendance that day to be recognized and honored. I thought, “This is it! I have to not only speak but face the very system, the very people that had brought me there that day.”
Those who had ignored, pacified, misled, and dismissed me. They were the very people who had left me feeling defeated, desperate, lost, and alone in our quest for treatment for Mark. I had not thought to read the agenda prior to the meeting as I was new to all of this. I felt the need to flee from enemy territory, but I fought that urge. I quickly read my speech over. I would be up speaking right after they would be honored.
I concluded that I still had to give my speech as written. I added one quick sentence to the prefix. “While I appreciate all the hard work that Solano County Mental Health Services does, I can only speak what my truth is.”
I then turned my head towards the large group now standing at the podium ready to be honored. I was a mere 6 feet away. I am sure some of them recognized me too. The director of Health and Social Services who had refused to even talk with me was there. Board members from the Mental Health Advisory Board were there. The Public Guardian was there who had told me on two separate phone calls, “That if it were his seriously mentally ill family member – he would put him on a plane and drop him off in a 3rd world country because the U.S. Mental Health system was so bad.”
He also told me that Mark is in a catch-22 and could not qualify for an LPS due to his dual diagnoses of a massive Traumatic Brain Injury. (Not true) He could not qualify for a Probate conservatorship due to his SMI diagnosis. I met the eyes of the psychiatrist that would not hold my brother longer than 72 hours. He quickly averted his eyes to the floor. I finally put a face to the name of the Mental Health Services Administrator who had never responded to over 30 emails, except to send one that told me to stop sending her emails, she had enough information from me! The outreach person was there that had told me, “I know your brother, he doesn’t want help.”
As each one was introduced, I put more faces to names of officials that had refused to talk to me or meet with me. There were many. The Deputy Director of Behavioral Health looked over at me and I could not look her in the eyes as I was tearing up. She had met with me twice, but I was told about the catch-22 concerning conservatorship by her also. She had emphasized about my brother’s civil rights to refuse services and that he even had the right to refuse an evaluation. I had sent her dozens of emails trying to provide her with Mark’s history. I had told her that HIPAA may prevent her from telling me anything about my brother’s case, but HIPAA does not stop the family members from being able to provide them with history and any information we see fit to help him.
What would the collective “system” that was sitting behind me going to think about what I was about to say? Due to the meeting being at full capacity the Chair of the Board announced that no one would be allowed to speak for more than the 3-minute limit. When it was time for public comments, I walked up in front of Solano Mental Health officials to the podium and all the people that had brought me there to advocate for my brother sat directly behind me.
I had tried to work within their rules. I had followed the laws. I had not left any one of them out of my journey looking for help for my brother, as did my sister. I had met with the Police department and our Sheriff too. I had met with the outreach to the homeless. I had talked with the D.A.’s office and Adult Protective Services. It was not a broken system…it was a non-existent system of treatment or services for the seriously mentally ill - especially for those with lack of insight into their own mental illness.
We were not able to improve or change anything in Mark’s life through the advocacy our family had attempted for over 3 decades. I wondered that day, “What was it going to take?” Nothing was working by following the rules of the system. There was nothing but failures at every attempt. Somehow - I did not feel very diplomatic that day.
I began my speech without hesitation, and I did my best not to let them see me cry. I addressed the Board of Supervisors and I did not let them shut me down. My words were on paper, but I spoke from my heart. I must have had their full attention as my speech went almost 9 minutes after being told no one could get more than 3 minutes that day. Usually, the Board of Supervisors do not comment after you give a public comment. But they did. I spoke of my brother’s struggles with psychosis, his history, his suicide attempts, his homelessness, fires, injuries to the family, the nearly 100 arrests, people beating and robbing him, and I asked the Board, “Why do so many of your own County officials tell me that Solano County has the worst resources for the homeless and mentally Ill? Why is that? Your people are telling me that!” I went on to say that my brother needs to have a Public Conservator appointed and that our family had attempted several times. I accurately predicted that while Mark was currently in a shelter, he would be returned to the streets soon and that he was going to die on the streets of Solano County.
Supervisor Vasquez addressed me at that point and told me that he knew my brother back in 1987 before he had his accident. He confirmed he had seen Mark on the streets for over 10 years. He also told me that he knew Mark had fallen in the streets and traffic many times and needed to be helped out of traffic by officers. I stopped him and asked, “How about other people having accidents because he crosses the street in the wrong place?” At the time I did not realize just how pertinent that exchange would be in Mark’s future. If officers were getting him out of traffic on a regular basis…, don’t you think that would have been a reason to 51/50 him? Being a danger to himself and other innocent people?
I ended my speech by asking for support of AB 1971. I knew that new legislation would be the only path forward to our quest for treatment and housing for Mark. As I returned to my seat, I once again looked into all those faces of the people that had made me speak out. Just advocating for my brother within their system was never going to be enough.
As I approached my seat, Supervisor Thomson had comments for me. He addressed the cost of the continued arrests. He said,” If we are truly a compassionate society, who’s more compassionate, the ones of us that watch those folks walk down the middle of the street possibly getting hit or causing an accident or those that say we need to address problems that have severe mental Illness?”
He also said, “To the point about resources, Ms. Rippee was absolutely correct.”
“The homeless know there are no resources available.”
“They have a saying; “S.O.L.A.N.O. Shit Out of Luck And No Options”
“That’s what the homeless feel about resources in this county!”
At that moment, I knew that we could continue to advocate for our brother within the system, but we would continue to be unsuccessful until we fought for the rights for all the seriously mentally ill. Ideas were already swirling around in my mind about thinking outside the box…outside the so-called “system.” We would never reach our goal of obtaining treatment for Mark unless legislation changed that possibility for all those with serious mental Illness or more aptly put, serious brain disorders. We would not succeed without changing the hearts and minds of society. I was a naïve’ diplomatic advocate when I arrived that day.
That day they turned me into a determined SMI/SBD Activist, and I would surprise even myself the lengths we would go to reach our goals.
Unfortunately, many of my concerns that I spoke of that day came to pass. 13 days after this meeting my brother set a fire at the shelter, ran away from the shelter and a “Missing Person” report had to be made. Hundreds of notifications through social media came to us over the last couple of years of near accidents and near misses. Eventually our brother was hit twice by cars within 4 months of each other. He was hospitalized and had numerous surgeries. The second accident left him in critical condition, and he spent 8 months in the hospital recovering.
When he was discharged - the hospital dropped him off on the same street where he was hit by cars twice. I did not want to be right, and I do not want to be right about him dying on the streets “With his Rights on.”
The lack of a system that has resources and treatment for the Seriously Mentally Ill in this county turned me into the activist that I am today.
Please consider joining the National Shattering Silence Coalition to make our collective voices heard by those with the power to reform and make changes. Click on this link to read the points of Unity of the NSSC and join if only to make a phone call or help with e-mail campaigns to sharing information or serving as a volunteer on their many committees.