While shopping at the local market recently, I noticed a woman who was helping two gentlemen do their shopping. We have a program in our area that pairs an aid with people who have mental or developmental disabilities to help them do routine tasks, like shopping. As she was helping them through the checkout line the last gentleman started yelling and beating on the shopping cart. She patiently tried to divert his attention but it was too late, other shoppers were now staring. She paid them no attention, and pushed forward on the mission, even as the man started to yell louder and hit the cart harder. Eventually, they made it through the line and began to leave the store. People rudely stared them down as the made their way through the doors.
I thought about how rude it was for others to act as if this man could control himself, or was even somehow aware of what he was doing. He could not control himself. His brain is different, it is an organ and it is responsible for dictating his behavior. He cannot control his brain, any more than someone with diabetes can control their pancreas.
It is just as rude and impolite to stare at people who have mental handicaps as it is those that have physical handicaps. For some reason human beings have this habit of picking out differences and then staring at them, or worse, saying or doing something that brings attention to those differences in a negative way. Mental health advocates have been trying to fight against this for many years, crying stigma over what is actually even worse, this is discrimination. We have been taught to place tremendous force and finance behind eliminating stigma and unfortunately, it has been an ill-placed and ineffective effort.
My son was not born with Autism or a mental handicap, he was however born with schizophrenia. Schizophrenia is always there lurking until it presents itself in late teens, early adulthood. My son’s brain is different, he cannot control his brain and when his brain puts him in psychosis he is at the mercy of his disease. He will, however, be responsible in the eyes of the law for any action he takes during this time, which is discriminatory. He is being persecuted upon for having a disease. The medical definition of insanity and the legal definition vary, and the latter is almost impossible to prove. It is designed to weed out those that would use insanity as an excuse to escape punishment, but it harshly punishes those that are indeed sick and need help rather than incarceration. Mental illness is criminalized in America, you need only look to the fact that the largest mental health facility in the US, is the L.A County Jail. They would not spend billions of dollars on building these types of facilities if funneling the mentally ill into them was not the game plan.
When your child falls and breaks an arm and you call 911 an ambulance shows up and takes your child to the hospital. If my son’s mind breaks and I call 911, it is not an ambulance that shows up, it is a police car and there is a great chance my son will be leaving handcuffed. He may also be arrested for actions, he is not in control of. Bertram Hiscock was arrested for felony kidnapping when he grabbed his mother in fear of the police, he later died in jail, by choking on his own feces. Pamela Wooden’s son’s Christopher endured the other type of tragedy, he was brutally pepper-sprayed, tased and then shot 4 times in the chest for being suicidal. These are the things that we have to worry about when calling 911. Things that in 2019, no parent should have to be in fear of, when all they are seeking is medical help for their child. Our children are 25% more likely to be killed by the police than any other demographic.
It is discrimination.
If your mentally ill child is lucky enough to be taken to the hospital, if they are over 18, you will be shut out of their care completely, unless you have secured a guardianship. HIPPA has made it almost impossible to even know what is going on behind the locked doors of a psychiatric unit. Your child is also usually far too ill to call home so you are left helpless to wait on a miracle. They are there for being suicidal often and there is nothing you want more as a parent than to talk to them or know from staff that your child is safe. You are denied this. I have had several loved ones hospitalized with other physical illnesses and I have never once been denied information on their well being by nurses or doctors. A phone call usually gets you relevant information. This is not the case for psychiatric illnesses – you are shut out completely. I was told by staff on Elliott’s last stay that they could not confirm or deny that he was even in the facility.
This is discrimination.
This discrimination then leads to the patient being dumped off somewhere three days later. Chances are high that your loved one could be released without you even being notified. You will also be left unaware of any medications or follow up treatments your loved one may need to be successful and safe, and this is only a recipe for disaster. First off, three days does absolutely nothing for a person in a psychosis. Elliott’s last psychotic break lasted for several months. Three days of medication does nothing when most prescribed antipsychotics take months to build up and be effective. So they turn around and release psychotic patients all of the time. This violates their Emergency Medical Treatment Act Rights, but the hospitals don’t care, because they get away with it repeatedly. They take these patients and dump them outside of the ER, take them to homeless shelters, or put them at a bus stop and leave them there disoriented and in extreme danger, without ever once contacting the family.
This is discrimination.
The most extremely ill, the ones that have been diagnosed with chronic diseases and disorders that will never be cured like schizophrenia and bipolar 1, are then lumped under the mental health umbrella with those that have minor mental health issues. People that have video game addictions, low self-esteem issues, and perhaps are dealing with stress brought on by life changes do not remotely compare with those that suffer from chronic psychiatric diseases like schizophrenia.
This is discrimination and leads to the illest receiving a great disservice.
The fact that many mental health groups use terms like “recovery is beautiful” is in fact discriminatory. People with schizophrenia never recover, they manage symptoms. A person with schizophrenia could be hospitalized 50 or 60 times in a lifetime, be incarcerated, and homeless because of their diseases. Comparing schizophrenia, bipolar 1 or schizoaffective disorder to self-esteem issues is ridiculous. It is like comparing heartburn to a heart attack, and they need to be separated into their own classification. As of now, they are being discriminated upon by every major organization and entity in this country.
This is not stigma – this is discrimination.
Psychiatric services are rarely treated under private insurance. Discrimination. The Medicaid program does not cover their treatment either. Discrimination. The ER triage method of getting them in and out in 3 days is insufficient and would never be tolerated for other diseases. This is discrimination. Being told they can recover, is discrimination. Being sent to jail for being sick. Discrimination.
I read a comment the other day on one of my posts where a woman had started a Facebook group in hopes of finding her mentally ill mother. She has now reconnected 60+ people with their loved ones. People on the outside of our world do not understand that if our loved one wanders off in the middle of the night, and even if we report it to police, we will not be informed by hospitals or other places like homeless shelters etc because of our mentally ill loved ones “rights”. They cannot care for themselves or make rational decisions when they have gotten off of their treatment plans. There are mothers right now in this country praying that their child will be arrested just so they will know where that child is and that they are eating, and not dying behind a dumpster somewhere alone. Why is this country set up to make this so hard for us to keep our loved ones safe?
I don’t like to be negative in my writing, I like to be encouraging by nature, but there is no other way to describe this situation in America. Every state needs funding, private insurance needs to start covering this care, we need more long term facilities and more A.O.T treatment options. We need HIPPA exclusions for those with brain diseases and we need law enforcement to work with parents and psychiatric professionals to bring this country out of the dark ages and make it a place that is safe and compassionate for these people living with chronic, incurable, brain diseases like schizophrenia, bipolar and schizoaffective disorders. From top to bottom our current system needs an overhaul.
We need a common sense approach to mental illness. We need to be able to intervene on their behalf and save them from themselves. Their own mind puts them in extreme danger, often. They are unable to make quality decisions when they are in the throws of a delusional reality. It is as irresponsible to allow them control over their decisions, as it is to allow a five year old to play in traffic. Common sense tells you that this will end in tragedy. We need to be able to intervene in their care, in a simple way that is easy to maneuver.
Our children are dying, rotting away in solitary confinement, succumbing to the elements alone on street corners. We are on the frontlines in a war we just are not equipped to win. We need help, we need support, we need the nation to back us and say that this discrimination has to stop. Every American deserves to be treated like a human being, not an animal. There needs to be a formal roundtable discussion between all the stakeholders in this situation. The government, the parents, the health care providers, to sit down and make a game plan to get these people the help they need. To end this discrimination finally.
I know when we look back on our nation’s history, this time is going to be of great embarrassment to us. The fact that we have allowed the most severely ill amongst our population to be exploited, abused, neglected and shunned for this long is absolutely disgusting. The United States treatment of the mentally ill is the most criminal act of all, and every day that we continue to allow this abuse we are displaying gross negligence. We know it is happening, to allow it, makes us all responsible.
If you would like to become involved in the efforts to change the policies our country currently holds concerning the welfare and care of those with serious mental illnesses like schizophrenia, bipolar and schizoaffective disorders please consider joining the National Shattering Silence Coalition. We are always looking for new members to help us push forward on legislation that will end this discrimination and the civil rights abuses of the most vulnerable in our society – those wit/h serious mental illness.