For Curtis Grogan and the Voiceless Victims
by Dan Grogan
Two years ago I removed my brother (a 34 yr old developmentally disabled man) from a ‘group home’; his physical and mental condition had deteriorated to a life threatening level… All because of psychiatric drugs!
He lived at the home for ten years without event; he never required psychiatric intervention and flourished despite his disability. In 1999, things began to go bad, a few alleged outbursts introduced him to the world of SSRI’s, and he immediately showed adverse reactions. For months his condition worsened which earned him the added diagnosis of “psychotic features” anti psychotic drugs where added to his drug regime and things went from bad to worse. After less than two years of so called treatment my brother had gained more than seventy pounds, developed severe sleep apnea, erratic blood pressure, chronic diarrhea, seizures and a host of other ailments, but worse were the effects on his ‘state of mind’. He was suffering visual and audio hallucinations, he would pace intensely, strum his fingers, and shake or grab his head, (you could sense the internal strife he was suffering) this was labeled as “odd behavior” vs. symptoms resembling Akathisia and long term sleep depravation.
The medical community and his caregivers refused to acknowledge the happy, well adjusted man that existed before psychiatric intervention, they rationalized that this was a progression of his disability. One day I received a call from our mother, she was in tears and shaken, she had just returned my brother to the group from a routine visit home; she reported that he had numerous new prescriptions and his condition was worse. Conversations with staff and doctors yielded more psychobabble, as well as the ever present threat of placing him in a ‘restrictive environment’. I could visualize his pain; she said he had begun self mutilating (clawing as if bugs where under his skin (in his words “the bees.”) She also reported that he was contorting his face and stiffening his neck, looking as if he was wearing an “evil mask.”
I didn’t know what to do, my job had me located 400 miles away and all of my assets where tied to developing my rural property, but I made a conscious decision to stop this madness. I immediately jumped in my car, liberated my brother and his belongings then headed home. When I contacted the psychiatrist for instructions on the withdraw process, his first statement was “do you care about your family”, he implied that my brother might harm or kill my family if I discontinued or lowered the drugs; he said I “should not go playing doctor.”
He was unmoved by my accounts of the kind and harmless brother I knew before treatment, though he soon became aware of my resolve and said that if I insisted on a ‘drug holiday’ then I should just discontinue the drugs.
Because of research gleaned through the psychrights.org site I insisted that he prescribe a lesser dose, and eventually my breaking the pills in halves and quarters to slowly wean him from the drugs, nonetheless withdraw quickly ensued. This was a traumatic experience to say the least and I was beginning to feel that we where poorly equip to deal with this challenge. Then a miracle happened; he began to drop weight (2-5lbs per week), soon his physical and mental state was improving daily and there was hope.
By then I had lost my job and was fully committed to my brother’s recovery and researching this atrocity. I had accumulated a three foot stack of medical records and began the task of compiling it into a comprehensive chain of events. My research yielded some disturbing facts;
#1. Of the fourteen times they altered his medication ‘informed consent’ from his guardian was only sought in three instances.
#2. He was prescribed Ativan and Haldol as PRN’s (on top of his intensive drug regime), these drugs were never sent home on visits, and his guardian was unaware that they were being administered.
#3. Screenings for adverse drug reactions were never performed.
#4. There are still many questions as to the ‘due process’ followed in his involuntary and/or voluntary hospitalization’s.
I was incensed, this was illegal and I was going to scream from the mountaintops! Well I screamed and screamed, but I might as well have been alone on a mountain.
I filed complaints with every agency conceivable but always the same rubber stamp, “unsubstantiated claims”, (not unfounded but unable or unwilling to substantiate.) I would then plead for reconsideration and offer newfound evidence, only to be shot down again and again. I now have agencies asking me to ‘leave them alone’ and a psychiatrist’s lawyer threatening me with civil and criminal prosecution for libel and filing complaints with the authorities, needless to say more complaints followed.
Finally an advocacy group (with limited mandated powers), substantiated some of our claims, and made them part of the public record to boot! http://gac.state.il.us/hra/ (HRA #03-100-9030), they recommended changes for which I believe the agency is compelled to comply. This small victory brought to mind a Chinese proverb for which I repeat daily, “The man who removes a mountain begins by carrying away small stones” But I didn’t start this to toss a few pebbles, I intend to move rocks.
Unfortunately our options for civil recourse are waning. We have a lawyer who has shown interest in part of our claim, but is reluctant to pursue the medical malpractice aspect, (It has been almost two years and nothing has been filed, I feel the statue of limitations drawing near.) I am interviewing lawyers, but it is hard to find people willing or experienced in this field. I am also striving to accumulate the legal fees required to file his case under federal tort law, which carries little or no monetary recovery.
Unfortunately my experience with the legal community brings another quote to mind, this one a gypsy curse; “may you have a lawsuit in which you know you are right”
After almost two years my brother still lives at our home, and attends workshop where he is a delight to clients and staff. He has been evaluated by a host of psychiatrists (and even some doctors and trained professionals), who have all concluded that he needs no psychiatric intervention or mood altering drugs.
I rearranged my whole life to help my brother; we sold our house (at a loss), and moved twice until we found community service that served him. A lot of the benefits and funding disappeared after his removal so financial matters are a real concern, but I have no regrets and I seek no praise or sympathy, I had a duty to protect my brother for which I failed him all too often.
It is my opinion that my brother was the victim of abuse and neglect within the ‘system’, as illustrated in a 1996 Illinois Office of the Inspector General Study title; “The causes of abuse and neglect”, where it was observed that “the most common precedent to abuse and neglect is escalating aggressive behavior in the eventual victim.” I believe this to be the underlying cause of his alleged mental illness and subsequent psychiatric hell. Nonetheless my brother will live and flourish; furthermore he will never be harmed by psychiatry again!
My story might have ended here except for a memory that still haunts me. A client who I knew was standing on a stairway babbling incoherently, he was wearing shorts so I could see the feces running down his leg; he appeared very confused. I informed a staff member who orders him to ‘go clean up’, she then looked to me and states “sometimes his meds do that… but he needs them.”
“Most of the important things in the world have been accomplished by people who have kept on trying when there seemed to be no hope at all."