201 Comments Posted by dme

Just a few questions:

1) Were the experiments done in the bathtub, or was the tub used to clean the patients afterward?

2) If you don't know what kind of experiments they were, how do you know there were any experiments at all?

3) If you can't describe the "experimental juices," how do you know there were any juices at all?

4)If these barbaric experiments were done, why weren't the records destroyed? Obviously this sort of experimentation would have to remain secret, but the records were just dumped in an old farmhouse?

5) Just how did you become the one--the few-- who knows all these dreadful secrets? With all the class action lawsuits that led to deinstitutionalization, wouldn't some lawyer have already come across this experimentation and used it to help win the case?

Now a few facts:

1) There was a strong eugenics movement in the US, which the National Socialist Party under Hitler took to the gross atrocities of the "Final Solution." By the time the Nazis were in full force committing crimes against humanity, the eugenics movement in the US was in decline.

2) Involuntary sterilization operations were done in the US, made legal under state laws and upheld by the Supreme Court in a majority opinion written by Justice Oliver Wendell Holmes. There were a few doctors who thought that it was best to withhold treatment from newborns with severe abnormalities, but this never went further than a few isolated cases. While there were plenty of people who wanted to prevent individuals with mental illness, and more particularly those with mental retardation, from having children, there was never any proposal to "eliminate" people already living. An excellent book on these topics is "War Against the Weak: Eugenics and America's Campaign to Create a Master Race" by Edwin Black.

3)There were experiments done without the kind of informed consent and other ethical safeguards we consider mandatory today, but those experiments were not exclusive to psychiatric hospitals and institutions for people with developmental disabilities (think of the Tuskegee airmen or the studies of deliberate air contamination over towns and schools, etc.).

Finally, it is always a good idea to question, to verify, to THINK. Sometimes people take a subject that has a grain of truth, and expand on it until it fills a whole silo, just to see how much outrageous BS they can get others to accept. Believing and spreading this kind of garbage does nothing to further the cause of better care for people with mental disabilities. It only makes people skeptical of everything you say, and plenty of regrettable actions really did happen. There's no need to embellish with such far-fetched nonsense that serves only to diminish the real suffering that did occur.

sorry so long. I tried to not say anything, but the more I thought about it, the more I had to respond. At least I finally figured out how to arrange my posts in paragraphs instead of one big block :-)

Hospitals for psychiatric treatment may, at first glance, seem like prisons, but there are vast differences (except those which exclusively house people who have committed serious crimes but were found not guilty by reason of insanity). Almost any congregate living situation is going to look rather sterile and impersonal and have a degree of regimentation in its daily routines. Today there is much greater emphasis on individualized treatment and patient's rights than there was in the "bad old days" of "maltreatment" and "abuse." There are also many more options for treatment today, treatment that is much more effective than the old methods. But even those old methods, like today's, were not intended to be punitive or to "blame" the patient for the symptoms of the illness (and if they were used in a punitive manner, that was because someone either didn't understand how to use them or chose to not use them correctly). The goal of the staff and of the hospital's design is to help the patient feel safe and achieve a level of stability sufficient for returning to a productive life in the community. Observation windows in the doors give some privacy to the patient, but also permit staff to watch the patient to prevent suicide or self-injurious behavior. Glass bottles are prohibited because they could become weapons. A daily activity schedule is enforced because the routine and the activities help the patient change the patterns that led to hospitalization. Medication can do many things, but medication alone can't do it all. Patients often also need to develop coping skills, ways of dealing with anger, healthy ways of expressing feelings, etc. The hospital is structured so that the patients can do this in a safe, supportive setting. Locks on the doors prevent patients from leaving when it would be dangerous for them to do so, and also protect patients from unwanted visitors.

Regarding volunteering--most community mental health centers and hospitals have organized volunteer programs and welcome people with a sincere interest in helping. Typically a criminal background check is required, as well as training in confidentiality, client rights, prevention of abuse and neglect, etc.

Special Olympics (for people with developmental disabilities) uses volunteers. Many communities have baseball, soccer, or swimming programs for children with developmental disabilities. Advocacy on behalf of those with mental illness or developmental disabilities is always welcomed--letters, phone calls to legislators, speaking at public hearings, etc. Contact the human resources department of the organization to let them know of your interest .

What does insanity feel like? In one seminar I attended, the instructor simulated the auditory hallucinations a person with schizophrenia might experience. She did this by asking us to listen only to her voice, and continued to speak in a normal volume while heavy metal music blared through the room. The exercise was based on descriptions patients had given her, and after a few minutes of struggling to focus on what she was saying, most of us felt like screaming.

These don't look like Christmas colors from hell to me. I have really good memories of Christmases and other holidays celebrated with my clients (if I were at work now, I would have to say "consumers," but I never liked that word). Holidays gave us all a chance to just be *people* instead of "staff" and "client/resident/patient/consumer." We could have fun instead of only implementing training programs. A lot of our people didn't have families to spend the holidays with--staff was it. That helped us remember the spirit of the holiday, and we did everything we could to make it extra special. We decorated, bought or made gifts, had parties, prepared special meals and treats, took people to holiday-related community events, planned happy surprises for one another. Sometimes we were able to get permission to take one or two clients to our own homes to spend the day with our families, or to bring our families to the group home for dinner or a party. For employees like me, who lived far away from their own relatives and could only get home a couple of times a year, we had people with whom to spend the day. Almost all clients, even the ones who usually resisted training programs and social activities, enjoyed making decorations or gifts and planning special meals. Some of my most special Christmas ornaments are handmade gifts given to me by clients. Even though the job is stressful, too often thankless, most of the feedback one gets from society is negative, and progress usually comes in increments that are barely measurable, it's far from a one-way street from staff to client. I know that I received far more than I gave.

Used copies of the "Social Skills" book are available on amazon.com. Especially given the date of the book, I don't find anything offensive about the title. Mental retardation is classified as mild, moderate, severe, or profound. The diagnosis is made on the basis of IQ testing and assessment of the person's skills (or lack of skills) in various aspects of daily living. If evaluations of the person cannot yield a valid score (the person is "untestable"), the diagnosis "unspecified mental retardation" is used. A person with severe mental retardation would not be able to read, while a person with mild mental retardation would be able to read at about a sixth or seventh grade level. I think the word "for" in the book's title is used in the sense of "giving to." For example, "blankets for the homeless" doesn't mean that homeless people will be weaving blankets, it means that there is a drive to collect blankets to be given to the homeless. I recall reading a comment by a former employee of the hospital which said that at the time of its closure (parts of the hospital were used until 1991), the residents were people with Down Syndrome. Given that, this book would have been most appropriate. The word "retard" is always offensive, as are words like "nuthouse," "cuckoo house," and "mental" when used as a noun. What makes them offensive is not (just) that they are politically incorrect, but that they HURT. They devalue and disregard the people to whom they refer. I don't mean to come across as harsh in this comment or any of my others. I'm trying to share what I've learned from individuals and families, in hope of increasing understanding and acceptance.

like a country song: "Yes, it goes on for forever And it seems to never end. It's the Longest Hallway in the World."

Were the arched panels on the walls used for holding fire extinguishers?

Autopsies were probably only done if the patient's death was unexpected (there was no disease process or accident that clearly caused the person's death), unattended (the person was found dead but had appeared to be in no danger prior to that), or the patient's family/guardian/doctor requested an autopsy. The first autopsy report I read was for a person who was found dead on the floor of her bedroom one morning, after staff observations all night had indicated no problems. It was quite disconcerting to read about the procedures, with the weights of various organs, all in very dry and specific scientific terms, and to think that this was a person with whom I had worked for years. In the end, this is what we are--just a body, no longer a *person.* I hope that makes sense...even then, after all the observations and toxicology reports, the cause of death remained "undetermined natural causes." Yes, even though she was "mental" and lived in what another viewer called a "cuckoo's house" (those are really offensive and hurtful labels, as though someone with a mental disability is somehow less important, less valuable, less worthy), the staff, her family, and the medical examiner were all very concerned about what had caused her death. Please forgive me if these comments or any of my others seem harsh, because that isn't my intent. I just wish there weren't so many misunderstandings about mental illness and hope that maybe I can share some of the things I've learned. People with mental illness are more than their illness. They are sons and daughters, parents, husbands and wives, students, workers, artists, musicians, friends--just like everybody else.

"Those with complaints about the food, please form a line in front of the radiator." :-)

I've had to make the decision to file a "mental hygiene" petition to have a person committed to a psychiatric facility. It is never a decision made without very careful consideration and exhaustion of whatever alternatives may be available to help the person. An emergency appointment with the psychiatrist, medication adjustments, intensive outpatient or partial hospitalization, admission to an unlocked crisis residential unit...only when an alternative is unavailable or has not worked does commitment become the best option. I know it wasn't always like this (often because there was no intensive treatment available in the community), but things have changed. Some of the situations in which I have petitioned for commitment include patients who were so out of control due to psychosis that they singlehandedly trashed a general hospital's emergency room before they could be restrained by hospital security guards with the assistance of several city police officers. In another case, a patient had attempted suicide by cutting her wrists and taking an overdose of pills. In the emergency room she refused to sign a "no suicide" contract and stated over and over that when she got out of the ER, she would find a way to kill herself. The family member with her was certain that she *would* continue suicide attempts until she succeeded. She would not have been safe in the community. There are also times when professionals miss signs or wait too long, and there are tragic, deadly results.

This is so magical, a beacon of hope on the hill. It's like the light is accenting the building, illustrating the hopes that its designers and architects had of making it a place of healing and new beginnings, and not the dark reality that these buildings became in the decades of overcrowding and underfunding. For photography experts: What is it about the light at sunrise and sunset that makes it so beautiful and so different from light at other times of day, a particular 'cool' quality in the morning and a 'warm' quality in the evening? I suppose it has something to do with the angle of the sun and the amount of moisture in the air, but I wish I knew the physics behind it (maybe the mystery is part of the magic, though).

Speaking of the Cold War as history is just incredible. I remember being in grade school in the late 60s when fallout shelter signs were on most of the large buildings in my little town (which was within a couple hundred miles of an airbase where B-52s were based), learning the difference between a tornado siren and an air raid siren, and having air raid drills in school as well as fire drills and tornado drills. Yet I don't know, somehow I think maybe I felt safer with the whole crazy doctrine of Mutual Assured Destruction than I do now, with black market arms trading and very well-financed terrorist groups.

Of course we should all just get along. But those of us who have dedicated our professional lives (and our personal lives, too, because these aren't jobs you just walk away from at the end of your 8 or 12 or 16 hours) to helping people who need assistance to have the best lives they can, also feel an obligation to at least try to educate the public on behalf of the people we serve. Much of the sadness and pain and abuse associated with these facilities would not have happened had those who controlled allocation of resources (and that's all of us via the voting booth) not considered them just "nuthouses" for the "insane." Mental illness is not a character flaw, is not a sign of failure, is not "all in the head" (although it is a problem with brain functioning). It is just as real as cancer or kidney failure or any other disease. People who have it deserve the same regard and care that we give any other person. Think about some of the ideas we learned in school--the way to judge a society's goodness is to look at how it treats those members least able to care for themselves, and that until there is justice for all, there can be justice for none. How can we just write off people as being unworthy of pleasant surroundings? How can we say they are not important enough or not deserving enough or not aware enough to notice or care? Pretty much everything we say tells more about us than it does about those we cast aside as "other."

I don't imagine people glaring down from the windows. I feel like they would be delighted to have a visitor, to have some special attention and someone new to talk to.

Just because a person has a mental illness doesn't mean s/he is no longer human! People with mental illness enjoy parties and social activities just as much as any other group of people--perhaps more, because they often feel and are left out. Music, dance, fun, social interaction--all are very therapeutic.