The Freedom to Choose...on the streets with Anosognosia
by Catherine J Rippee-Hanson
Mark, my brother, is homeless with a "grave disability" that brings disgrace to Solano County, although he is the epitome of what that legal term should entail but does not. After being blinded in an accident 34 years ago, recovering from a severe traumatic brain injury, then developing schizophrenia with bipolar disorder and anosognosia, he was struck by two different cars in a 4-month period and then spent the better part of a year in a hospital recovering from massive critical physical injuries - but he still is not considered to be a danger to himself or to others.
A person who is gravely disabled is meaningless if he is given food by good Samaritans or eats out of a dumpster. The fact that he lays under a bush or tucks himself into a corner of an alley makes being gravely disabled meaningless... even if we or others provide him with clothes or blankets. Food, shelter, clothing. It does not matter that he has anosognosia (a medical condition of the brain) and all that entails including not understanding or comprehending the ramifications of his so-called choices.
Anosognosia is also explained as a failure to perceive his serious brain disorder - a term introduced by neurologists a century ago to denote “a complete or partial lack of awareness of different neurological and/or cognitive dysfunctions.” It is not the same as denial of illness. It is complete lack of insight that up to 50% of people who suffer from serious mental illness of the brain have because of damage to their brain in association with that brain disorder.
Anosognosia is a major obstacle that cannot be ignored by those of us with faculties and reasoning yet remains a justification for leaving the most vulnerable in our society to fend for themselves under the guise of choice or free will.
As a result of that obstacle, we struggle to get Mark the care he needs. Those with the power to help have said so many times... "But he doesn't want help. When we asked him, he said he was not in need of assistance. He says he does not suffer from mental illness. He declined assistance and resources when we asked if he wanted any."
Well...Duh! This is exactly what a person with anosognosia would be expected to think and speak.
Our family has been trying to have a Public Guardian appointed for Mark's sake through the LPS conservatorship process. We have advocated, implored, and demanded that those with any power assist in securing him housing, medical treatment, physical therapy, and/or comprehensive neuropsychiatric assessment and treatment. We have contacted every county, city, state official, senator, representative, and even the White House about my brother's case. Every director of services, the D.A.'s office, the Vacaville Police Department and their CRU (Crisis Response Unit), Homeless Outreach Program, Adult Protective Services, the Public Guardians' office, SSI, and Medi-Cal social workers know about Mark's case. We have inundated them with emails, phone calls, petitions, speeches, newspaper articles, opinion pieces, letters to the editor, magazine publications, blogs, and books. We are currently working on a documentary that is about several families navigating an invisible sea of detachment and apathy with their loved ones who may not realize they are even sick. Mark is seen by many on the streets of Vacaville as they go about their daily business, although he does not see them. All of them turn a blind eye to his suffering. He is ignored. Obviously ignored with the caveat that he is free to choose for himself what he needs regardless of whether he knows what that is. He is ignored because he has the right to refuse help, he does not know he needs. His civil liberties and rights are so strictly protected that no one can assist him to get help. He has the right to choose... doesn't he? After all, he has free will. There are many philosophical and religious debates regarding whether free will exists, what it means, and what its consequences are. The concept of free will is sometimes described as a right to do whatever one wishes without external influence or wishes. But free will is not a legal construct except for those who suffer from serious brain disorders such as untreated Schizophrenia, Bipolar, or schizoaffective disorder who also have Anosognosia and therefore are not even cognizant of having anything wrong with them. Beyond existential and philosophical debates about whether free will exists... there is also the way it is applied in a legal sense, especially to those uneducated about mental/brain disorders and anosognosia. Free will to make choices in the absence of set limitations, people would have the capacity to choose their course of action without interference. Moreover, free will is strongly linked to concepts of moral responsibility, praise, guilt, and sin, which are all related to decisions that are made based on freedom of choice. Advisory concepts, persuasion, deliberation, and prohibition are also associated with free will. Actions of free will are regarded as meriting credit or blame. Hence, he must be regarded as having "free will" and can be praised for choosing the help he needs or blamed with a shrug since that is viewed as his choice. That is the crux of all of this, isn't it? As a result of his civil liberties, he cannot get the help he needs, or rather, he does not realize that he requires assistance. Free will? I think not. He is not free from suffering. He is not free from mental or physical torment. He is not free from pain and anguish. He is not free from abuse. He is not free from the voices that never shut up. With anosognosia he is not free to choose willingly or consciously... Yet in our society, he can just die on the streets of his hometown because he can be free with free will. Everyone knows of Mark. Every official, many doctors and the police are aware of his circumstances and the real tragedy is that not one of them will help him to get the care, services, housing, treatment, or anything that will truly help him. Not even mental health services. Not even medical treatment. Being psychotic and delusional is not an exercise of free will. It is the inability to exercise any free will. It is the very thing that precludes free will or personal choice. It is the very interference that is supposedly lacking in the concept of free will.
My sister, Linda went looking for Mark yesterday, and found him walking in circles in the middle of a busy intersection ranting in fear, agitation and arguing with the voices. Once she had struggled to get him out of the road, she tried to calm him, and he said that a person had warned him that they know he is alone all the time and that they are going to kill him. Trembling and visibly shaken, he said someone had tried to sexually assault him. His fear was real. His fear is his reality. I do not believe Mark would freely choose to live in this reality of fear and terror.
A truck barrels by just after my sister, Linda managed to get Mark out of the road... just barely.
Our family has experienced many traumatic things over the years including this incident. All the suicide attempts... all the accidental injuries he caused family members... my sister, almost falling out of a moving car on the freeway while trying to pull him back in or trying to pull him down from an overpass when he wanted to jump. Taking a loaded gun from him required our mom to wrestle him to the ground. He walked in front of traffic and caused traffic accidents including the two incidents where he was critically injured and almost died. But he did survive although broken and shattered again only to be dumped back out on the streets in worse condition. The beatings and robberies he has endured repeatedly... The constant injuries and falls that happen to him... walking into parked cars... light posts... street signs... trees or falling down steep embankments.
There were hundreds, if not a thousand phone calls made to us that we tried to make sense of over the years. Always trying our best to get Mark treatment only to have it end in arrests and incarceration. Jumping startled when the phone rings with our hearts pounding as adrenaline rushes through our veins in anticipation of the worst news. With the heart pounding, we become breathless as we call the coroner's office multiple times to make sure a dead body is not Mark or waiting for a return call to confirm. In the past, I have experienced a familiar scenario that I hope never to repeat.
The night in August 1995 when my late husband did not return home, a friend told my teenage children that she thought she had seen my car on the 11pm news. As I had been working, I did not talk to her, and I was exhausted by the time I got home. I fell asleep waiting for him to come home. The next morning, I was terrified something had happened to him and went to the house of a neighbor who worked as a volunteer sheriff on the delta island where we lived. His wife made me a cup of coffee and tried to keep me chatting a bit while her husband made several phone calls to the highway patrol, the county sheriff's office and even the local news station. After I thought, he had exhausted getting any news, he said he still had one more phone call to make, but he was not sure if I wanted him to make it. It was to the coroner's office.
Believing at that point that no news was... well, no news - I had calmed myself with the thought that he had just gone night fishing and forgot to call me, so I said yes, of course... just to make sure, you know? The next words I heard was my neighbor saying to someone over the phone very solemnly, "Yes, she is standing right here." The room melted away as my knees hit the ground with a loud thud... the thundering static of rushing blood flow in my ears blocked the sound of screams... my screams of no, no, no! One of the most profoundly overwhelming moments of shock and tragedy I have ever experienced in my life. Twenty-six years later, I still cannot describe that experience without tears... even now. I never want to experience a phone call like that to the coroner's office again. Once is more than enough.
Even so, my family braces for that type of call over and over when it comes to my brother, Mark. Our family has already experienced many frantic emergency calls, beginning with the first phone call when he had his accident in 1987, continuing for decades with dozens of calls from police or doctors, and more recently when he was hit by two different cars, but each of those times he was still alive... there was still hope.
The biggest fear we have is that sooner rather than later, that phone call to the coroner will have a totally different outcome. We prepare ourselves for it... the inevitable. Not despite Mark's so-called free will and freedom to die with his rights on rather than care and treatment under our current laws - but because of it.