To begin, there seems to be a long history of societal neglect and indifference on the part of our culture concerning the plight of the mentally ill. So why am I writing about this issue now? It is because this is still a very urgent problem that some would say is even desperate in nature. I asked an expert in the field of psychiatry at the University of Iowa if there was an urgent need for more community centers and hospital services to care for and treat people with mental illness. I asked if the biggest obstacle in mental health care is the inaccessibility of the system for the majority of the mentally ill. The professor replied: “I’m not sure if it is the majority but it is a large number and a very real and extremely important issue….”
What has caused this ‘inaccessibility’ of the system? I am of the opinion that the amount of services for the mentally ill throughout history and what currently is available is a reflection upon the societal values and, subsequently, attitudes towards those who have a psychiatric illness or disability. In biblical times it was the leper who was the outcast. And now in modern times it has been my experience that the mentally ill are, to many, the “undesirables” of our Western culture. To suffer from this disability, as I do, one is placed at the mercy of the able-bodied and strong-minded.
The Judeo-Christian religion, the religious tradition I was brought up in, supports the notion of compassion for the weak and sick and, currently, in modern-day America, there are some people, such as many in the health care industry, which uphold a type of ‘dignity of life’ philosophy for human beings. However, had I lived in Nazi Germany from 1939 into the late 1940’s my life would most likely have been cut short. It would have been ended by the Nazi regime which had recruited the top academics, as well as, the most revered physicians and nurses of their health care industry to carry out extermination programs.
It may help to clarify my position by use of polarity or contrast. So I will explain: Starting with the eugenics movement in the United States in the early 1900’s, a movement to cosmetically harness the reproduction of human beings with the aim of creating the best genetic outcome, it soon made its way across the ocean to Germany. There eugenics was adopted in the attempt to cleanse the German society of the weak and the undesirables: those considered to be “inferior,” the “useless eaters,” those who had a physical, emotional or mental disability. I learned in my studies that this was clearly the aim in the Nazi Germany era when the political leaders instigated the Aktion T4 program. In order to establish the “superior race,” Germany murdered over 100,000 disabled babies, children, adults and elderly by lethal injection, gassing, or starvation.
One would wonder what kind of society could commit such heinous acts. What are the attitudes and values of a people that would allow and even aggressively pursue extermination of the most weak and vulnerable of its citizens? The depravity knew no bounds. In my studies I found that the homogeneity of the German political structure at this time in history encouraged public conformity. So when Hitler rose to power there was little opposition for him. He demanded allegiance backed by a special police force that terrorized the common people. Few had the courage to resist but some members of the Roman Catholic church, as well as some Lutherans, protested, risking and, for some, losing their lives.
The Other Side: How Do People With Disabilities Feel?
I decided I wanted to hear from people on the “other side,” those whom today are cared for by loved ones or supported by government benefits and programs here in the United States because of a disability. So first, I approached two friends that I had met while volunteering at a hospital in the city where I live. I wanted to know if my handicapped friend and her caretaker think that life has any value for them. Do they experience a meaningful existence? Do their lives have any worth?
[I am using pseudonyms]
Claire, the mother and caretaker, is a slender, red-haired 60-some year old articulate woman of Irish decent. She loves to talk and can gaily converse about almost any topic with intelligence. She can be seen pushing Michelle in her wheelchair around the hospital while they are volunteering. Sometimes, if you look closely into her face, you may see a reflection of a heavy heart. Michelle is Claire’s daughter and is a striking beauty with full thick and naturally wavy blond hair. She has a gentle smile and her facial features out shine New York’s highest paid fashion models though her speech is labored and it is an effort for her to get the words out. She has limited use of her thin arms and hands and must always rely on her mother’s pushing the wheelchair for mobility except when she is driving their pony cart on the farm.
Though Michelle does not suffer from a mental illness I can see a similarity between her kind of disability and those with a mental illness in the sense of having a limited capacity of brain function as well as being dependent upon able-bodied people for survival.
So I asked Claire to look over a list of questions I composed. I said, “Claire, here is my list of questions. Feel free to disregard any you are not happy with. Thanks!”
1. Are you familiar with the program called Aktion T 4 that was instigated by Nazi Germany before and into the Holocaust where the physically, emotionally, and mentally disabled where systematically murdered [by the medical profession]? These victims were babies, children, adults, and the elderly. The families often put their loved ones who had a disability into institutions unaware that they would be warehoused. Then the relatives received a fake death certificate stating a fake disease as a cause of death for their loved one. The Aktion T4 program actually got its start when some mothers or fathers had requested the killing of their disabled baby or relative.
The Nazi’s wanted to create a Super-Race and wanted to get rid the weak, “inferior” people, what they called: “Useless Eaters.” If people could not work then they were of no economic value to the German system. So the German authorities based their decisions of whether or not to kill the disabled on whether or not the people could work. What is your reaction to this program and what it stood for? What would you have done if you lived in Nazi Germany when this program was being instigated? If this is too strong a question, just any general impression would suffice. What do you think of the attitudes toward the disabled that this program represents?
Claire answered: I think that system was emotionally cold. I wonder if the people responsible for originating that system considered what would happen to themselves when they reached the point they were thought to be too old or: if one of the Nazis had an acquired disabling condition would they too be killed?
Since I did not live in Nazi Germany it’s not possible to know what I would have done for sure, but I believe I would have tried to discourage that kind of thinking and acting in as strong a way as I could have, or possibly the only other thing would have been to get away from there.
To me it seems that program represents a fear within those who invented it. That fear being: they themselves were not perfect and they feared being ousted from “the group” so they invented a group of “others” to insure their own standing in the group.
2. How did Michelle become disabled? Traumatic brain injury from an air embolus in her circulatory system. At what age? And what is her current age? Michelle became disabled at 12 years of age. She is currently 40 years old. Has her level of disability increased, lessened, or remained about the same? Well, her “recovery phase” took a very long time, probably about 1 ½ yrs. and her disability leveled to what she is at right now.
3. How do you feel as her care provider? I’m very comfortable and very happy to be her care provider. What rewards are there? I have had many rewards. Still having her as part of the family is the biggest one. What does Michelle have to offer to the world and why is the world a better place because she is here? She motivates people, makes them feel appreciated, isn’t confrontational or threatening so people feel safe. She shares her sense of humor and is sensitive to others’ feelings. She sets a good example for others to know how to care about people.
4. Do you feel/think that Michelle has a meaningful life? Yes. Also, what joys and sorrows does she experience? I believe she is like most other people in those areas – it’s more joyful for her when she knows others are feeling joy too and likewise when someone is in sorrow she shares a little of that with them as well. Does she suffer from stigma and/or being ignored, abused? I don’t think so. We’ve had many little discussions about that and she tells me she doesn’t suffer those things.
5. What reasons did the health care workers give for asking that you put Michelle into an institution? The doctors at the time assumed she would need too much care, too specialized types of care, too physically demanding care for a working class mom & dad to be able to do while holding down jobs. They felt we’d “burn out” and possibly harm our own mental health further and give her substandard care. What did you tell them in response? I said we needed to at least give it a try, so that’s what we did and are doing. Is there stigma or public response? We have not experienced stigma that I’m aware of. A few people are sometimes OVERLY responsive to meeting her for the first time… talking to her too sweetly and thinking of her as a poor little waif or a lost puppy who needs a hug. But she seems ok with that… she just smiles patiently. Every so often a person or child will ask her what happened to her and she just says she got hurt a long time ago and needs to use her wheelchair to go places. But those people seem genuinely concerned for her as a person and her little answer is all they needed to feel comfortable around her.
6. What do you think of people who put relatives into institutions, then just forget about their family member as though they were dead and buried. I don’t know if anyone would actually forget their family member. They may have to go on with their routine life out of necessity. There are probably many deep thoughts that they can’t share but just aren’t able to do any other thing. Everyone’s life is different and so is how they must handle it.
7. If you become tired, what gives you strength to go on? Well, I’m a pretty lazy person, so I do not rely on my own strength to go on… as I mentioned… Michelle is a motivator. She’s a pretty good manager and can judge when I need a little push. Also, we do things with friends & family or look for some cultural “breath of fresh air” It’s pretty much the same as anybody else in the world… you miss out on life if you don’t “go on.” Do you have a spiritual tradition that is helpful for you personally, etc?I was brought up in the Catholic faith community, but have friends of all religions who’ve shared things they believe as well, so I guess I wouldn’t say I rely on any one tradition in the strictest sense.
Questions for Michelle (can you ask her for me?):
1. How do you feel as a disabled person? I just don’t think about that very much. I just feel like me, just a person. What do you find meaningful in life? Doing things to help people how I can. What is challenging for you personally? I wish I could do some kinds of things a little better without any help. What do you want to say to the world? Nothing really. I don’t feel like I need to say anything.
2. How do you experience your religious faith? I go to church and pray whenever I feel like it. Do you find comfort and inspiration in your religious faith? Yes. Does it comfort you to go to St. Mary’s? I could go to any church, but I know more people at this one, so it’s fun to see them there too. I guess that’s comfort?
3. What gives you strength to go on each day? I don’t exactly think it’s any certain thing. I just do it. What do you find interesting in life and what do you enjoy doing? People are interesting. I like seeing all the different things they do. I enjoy being around friends and my family. I enjoy being around animals. I enjoy reading and traveling. What is fun for you and/or rewarding? For fun I like to drive horses and ponies, going to a fair, ballgames and things like that. I think it’s rewarding to paint a picture that somebody likes or baking or cooking things and giving them to people to make them happy, being an aunt, helping children in the local elementary school learn to read.
The Place Where I Work: Accessible & Inclusive
My supervisor, a director of a patients’ library in a local hospital, has created a space where people who have a physical, intellectual, emotional, or mental disability can find acceptance and inclusion while working side by side the “normal” staff and volunteers. They serve the patients in the hospital. We find in this library volunteers who have: developmental disorders, seizures, brain injuries, autism, as well as, other types of mental illness. There are volunteers who must use wheel chairs and have little arm and/or hand mobility and others who use crutches. There are those who have difficulties speaking and forming words, and who may move slower physically. Yet, some of these last mentioned have minds as sharp as a tack and a quick wit. I’ve heard people call some of them “retarded” which is not the case; it’s quite the opposite. It must be hurtful for these disabled people when others treat them like they are intellectually deficient. It would take a lot of courage everyday to face this kind of attitude.
Tim: A Positive Attitude*
One person who volunteers in this library is a man named Tim. He cannot use his legs; he has an electric wheelchair and has restricted use of his arms and hands. Tim said that when he was born he stopped breathing and it injured his brain and body. Now, middle-aged, he is a bit short and stout, balding. Tim laughs a lot and has a great sense of humor. He brings treats for all who work there to enjoy. When I asked Tim about his disability, he answered: “There’s always something gained. My experiences/condition made me what I am. If I didn’t have this experience, I wouldn’t be what I am today.”
Now, that’s a positive attitude!
Once Tim said that he doubted he could come to work the next day because his wheelchair had broken down and he needed to get it fixed. [There was a temporary fix so he could be there that day.] He said that he didn’t want to stay home; that I should know that even though he wasn’t there (at the hospital volunteering] he really wanted to be there.
Tim has a good attitude about serving others as a hospital volunteer and, I believe, has a very meaningful existence. I’m sure he feels appreciated at the hospital and welcome.
* Personal Interview September 10, 2012