Cheap labor, administrative object or person?

Since the publication and reviews of the book Out of Place: Trapped in the Care System, the responsible association Lebenshilfe e. V in the German state Saxony-Anhalt has remained silent. Hard to believe Mathias Hoppe, who is obviously very intelligent, is still forced to spend his days in a sheltered workshop for people with disabilities. “Folding boxes, stuffing things into some sort of bag. These are the things I do even though I have an IQ of 132. I’m also a person,” a distraught Mathias reports.

Who can someone like Mathias turn to when the authorities responsible are apparently not interested in hearing about these human rights violations? On December 22, 2016, I interviewed Mathias Hoppe about his book Out of Place: Trapped in the Care System for his art project radio show Omott. Below is a transcript of our telephone interview.

Mathias Hoppe in conversation with Christian Discher

Hoppe: Your book The Voices of Those Remaining is very powerful and now you’ve read my book Out of Place: Trapped in the Care System. Can you give me some feedback on what you thought of my book, either positive or negative?

Discher: In your book, you speak for others who have gone through a similar experience, but are unable to critically express the experience as you do. You are an important witness whose story needs to be heard by the public. The system you were—and still are—exposed to is inhumane. As this is the case, I admire the bravery you’ve shown by telling your story. I can’t think of anything negative to say about your book. The only criticism I have is the continued lack of response your book has received since its publication.

Hoppe: I was placed in a group home for 14 years. In your opinion, what did this experience do to me?

Discher: I think you’re the one who can best answer that question. I think it’s terrible that people looked away for 14 years. I think it’s terrible that your abilities have been completely ignored. The system looked on as you were made ill by the institution Lebenshilfe e.V. in Saxony-Anhalt; however, they did absolutely nothing about it. The only thing they did was administer medication without once questioning the reason for your emotional and mental suffering. This suffering is apparently something they themselves created when they ignored the fact that you were a victim of discrimination even within their very institution. Psychiatrics prescribed your medication. The whole experience was a vicious circle which you finally managed to break out of after 14 long years. Anyone who reads your book will get a sense for what such abuses could do to a person. I have no words for some of the experiences you were forced to live through. It’s important that you get your book out there so it can find a large audience.

Hoppe: How should disabled and mentally ill people be cared for? How can they participate in society? What would feel right in your opinion?

Discher: We’re talking here about inclusion, that is, the equal right for participation held by all human beings. Structures must be created to enable each and every person the chance to participate in society. In my opinion, when we discuss inclusion, it’s important we don’t forget that people committed to institutions go through a brutal and cruel experience. And people with mental illnesses are particularly vulnerable because they have absolutely no chance to fight against structural discrimination. Even though some things have improved for people suffering from mental illness in recent years, it’s still difficult to speak of participation when those in positions of political power, including ministries and individuals who talk a lot about inclusion, still show no interest in dealing with human rights violations. Your story was published months ago, and there are also the stories told in The Voices of Those Remaining as well as those many people share on blogs or Facebook. As long as these cruel experiences are not heard or acknowledged, we can’t speak of participation—not when people trapped behind closed doors can actually be made mentally ill from that very experience.

Hoppe: What is it about me that made it possible for me to survive the harassment and complete psychoterror I went through? Maybe what scientists are now labeling psychological resilience?

Discher: Resilience is a term that is used in many different research areas. Synonyms include tough, durable, robust, resistant. Your story is one that required resilience, and to get through you developed strategies for survival. You yourself describe how you have a very good relationship with a therapist who recognized and supported—and continues to support—your true potential. At this point I have to mention I find it sad that this therapist had absolutely no chance to free you from this environment although he was well aware of how deeply you were suffering. Another important point is that you are a highly-gifted person, which your IQ higher than 130 proves. Because of this, you also had different possibilities that others don’t have. You got a hold of reading material and books on psychology to become informed, to find a way to free yourself from this “hole.” This speaks to your resilience. You actually healed yourself.
You’ve also found a way to express and capture your suffering in your manga drawings. Your girlfriend Angela is also the most important aspect; she has played a major role. Since Angela came into your life, it has completely changed in a very positive way. She is a strong person and, with her strength, was also able to free you from the swamp of the “care” environment. Because of the experiences she has had, Angela intuitively understands what is right and what is wrong. Look where you are today. You have written a book, your mangas are known to the public. Angela supports you with her strength and her love. Your ability to understand the injustice committed against you for so many years is the reason you were able to endure all the suffering you experienced at Lebenshilfe in Mansfeld. Using psychological strategies as a model, you also describe why people treated you the way they did, although you were so vulnerable. You created your own world, which helped you survive your time in the institution.

Hoppe: What do you think of my mangas?

Discher: Your mangas reach people who wouldn’t otherwise take the time to read your life story. You reach them with a language they respond to—a visual language—as well as creative dialogues. This is what makes your mangas special: the power you express with your drawings and illustrations. They show what kind of person you are. I’m not an artist; I can’t draw at all. But I can imagine that you often work a long time on your drawings, that the ideas and pictures come from deep inside you. People can experience a lot more from images, that which is beyond words and needs no explanation. The pictures speak for themselves.

Hoppe: Why do you think that the average caregiver acted like they were completely incapable of being wrong? Why didn’t my opinion count?

Discher: The caregivers misjudged your abilities. In their institution they felt like their actions and opinions were infallible. They never believed you would ever have the strength to free yourself from the clutches of the system and independently go out on your own. The caregivers were simply wrong about you.

Hoppe: What goes on the heads of bullies? Why did these people choose to pick on me when I’m actually a sensitive, cheerful and friendly person?

Discher: After reading your book I can’t think of anything else to say other than the professionals demonstrated an inhumane attitude; everything that was and is done to you shows the institution is not one that follows the principles of inclusion. I don’t want to generalize here, but it is simply unacceptable that people are treated in such a way behind closed doors.

Hoppe: Should we just accept bullying, meanness and harassment like so many of those in charge, for example, the psychologists at the sheltered workshop, pretty much demanded I do? Why is this so damaging?

Discher: I’d say it’s similar to how you phrased the question. Like you write in your book, you’re also again showing here the ignorant behavior and attitude of those in charge. These people did not even acknowledge that they work with actual human being; rather, they felt and acted more as though they were dealing with administrative objects that need to be managed. To them, you weren’t any more than a number. I can’t explain such behavior in any other way. Anyone who has read your book will understand what I mean.

Hoppe: What do you think of the person I describe in the book, who I refer to as caregiver C. What kind of damage did she cause to people in the group home in general, not just to me?

Discher: I don’t think I can answer that question. This needs to be closely examined and investigated. Not everyone housed in this institution has the capacity to report their experience. This needs to be cleared up in an official way.

Hoppe: What role do files play, the constant documenting and report writing, the 24-hour monitoring in the group home? In your opinion, why do I have a hard time trusting the world?

Discher: I think your mistrust of the world already began because of the way your caregivers acted. You weren’t treated like a person who has an equal right to participate in society, you were treated like an administrative object that has to be managed and “kept” by the institution. Like I already mentioned, your abilities were overlooked as was your ability to survive, work and live. They wanted— in fact, still want—to keep you in this institution. The authorities at Lebenshilfe in Mansfeld have to this day not responded, which makes a very clear statement about their concept of humanity as well as their understanding of inclusion. This is sad. You are cheap labor and such institutions have to take financial matters into account. What I asked myself after I read your book was whether this system is actually interested in enabling the people who enter it to become capable of living an independent life. After reading your book what makes your story important to discuss is that the supposed advocates of inclusion in your institution don’t appear to be at all interested in this idea. After all, if they are successful at helping people become independent they may as well close their institutions. Afterward they would no longer earn any money with the “objects” they were managing. Probably it was never the plan to allow these people, you, to establish an independent place within society.

Hoppe: The bullying caretaker—called caretaker C. in the book—once said to me in an argument, “Go ahead and write! For you it won’t make any difference!” (original quote from caretaker C.) What do you think of this statement?

Discher: This attitude is the reason why you write about her.

Hoppe: But doesn’t my book also show how helpless and overwhelmed the staff at the group home feel, a place which is chronically understaffed?

Discher: I have to say here that even if the staff at the group home is chronically understaffed, this is still no excuse when you consider human lives are destroyed. Anyone who works within this system, be they psychiatrists, legal caregivers or nurses, must be held responsible.
I started a petition where I stress that in our society we are in desperate need of a contact center where caregiver irregularities and human rights violations can be reported anonymously.

Hoppe: Let’s talk now about psychotropic drugs. I was given the drug Clozapine until after my burnout in 2005, after which my medication was changed. Why was I administered this drug for so long without being examined again to make sure it was still the right choice?

Discher: From what I read in your book I can say that the people who treated you, including the psychiatrists, demonstrated an inhumane attitude. The doctors went through their daily routine without stopping once to think what it means to give you these drugs and what they do to you. I find it more than amazing that you are able to speak publicly and present yourself after taking such medication for so long. I hope these people will also feel responsible in certain ways now that your book and drawings have been published.

Hoppe: My book also has nice moments which are full of hope, like December 13, 2012 when the blind women Angela meets Mathias and there is an instant spark between them. Why do you think my love for Angela is so very precious? Why does our love work so well?

Discher: Love needs no words; it was life that brought you together. I’m happy that you have Angela at your side. She’s a strong person and really there’s nothing more to say.

Hoppe: When Angela and I went to your reading at the Leipzig Book Fair in March 2016, did you notice right away that I was sensitive? What did you notice about me?

Discher: I’ve met so many people who have had to suffer heavy blows in life. Your openness and interest in my book and the way you asked questions: these were the cues I had that you must have also suffered through a similar difficult fate. In life, I think people often recognize others who have gone through similar experiences.

Hoppe: Do you think my story is unique? Or do you think there is a high number of unrecorded case and I’m only an example of someone who has now broken the silence?

Discher: I’ve called attention to human rights violations for a long time now. I report how people fare when they are helplessly committed to institutions. If we began to examine official institutions and places, so many stories would come to the surface, more than we can possibly imagine. Your story is in no way unique; many people were and are in similar situations. Therefore, the ability of your work to raise awareness is all the more important. I hope that those responsible will respond to the incidents you describe. And I know when we continue to work with the public we will achieve quite a lot. We will also speak for those who no longer have a voice, who no longer have the ability to speak of their fate, either because they are no longer living or because they no longer are capable of telling their stories because of the abuse they have experienced in these institutions. As survivors of this “voluntary system,” we are the ones who can never give up, no matter how hard the road becomes. We must continue vehemently fighting in our quest to raise awareness.

Hoppe: Why do I have this feeling that I have almost no one to talk to and almost everything that internally move me, what I see and notice, I only trust to confide to my pens and drawing paper, if I’m being honest?

Discher: Like we talked about before, you developed strategies and created your own world. Drawing and writing is part of this. They helped you to survive.

Hoppe: What else is there to say?

Discher: People often say we can’t understand the present when we’ve forgotten the crimes committed against people in the past. But how can we understand the present when crimes that are currently or have recently taken place have not reached public consciousness? The human rights violations that take place in nursing homes and psychiatric hospitals as well as other medical institutions go almost unnoticed in society. But human lives are destroyed behind closed doors, and after their stay these people are too weak to raise their voices. They have no lobby or advocates. It is important that we begin to process these human rights violations so that we can create a culture of memory and ensure that the perpetrators are held accountable.

 

 









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