Life with Usher Syndrome (part 1)

Exclusive interview with Afroditi



During the last and a half year that I have moved in Rotterdam I met many Greek newcomers who left the fatherland to come in the Netherlands to study or to find a job. One of the most interesting Greeks that I met when I visited the Greek community here was Afroditi. In the beginning I didn’t pay a lot of attention to her as I was looking around me all these completely new and unknown faces, but soon she talked to me and her smile was so warm that I sat on a chair next to her and we started a general conversation.

I cannot remember if we talked about it the second  pr the third time that we met but I am sure that soon after our first meeting she told me that she is diagnosed with Usher Syndrome. I remember when I heard these two new words I reacted in a spontaneous way by answering “Oh really?”. I knew that I have heard it before (probably during my bachelor studies) but I couldn’t be completely sure. So I asked her to remind me what the exact symptoms of Usher Syndrome were. The truth was that no, I didn’t remember a lot about it, for example that it was a syndrome with such serious symptoms. Moreover, I experienced the biggest surprise when in the next seconds Afroditi told me with completely natural voice and without any hesitation: “Now that we are talking I am wearing hearing aids. Also I don’t have a peripheral vision, so I need to look at you to be sure that I see you”. After these words she was acting like she had talked about the simplest thing in the world. She stood up from the chair and without any difficulty or hesitation she walked full in confidence to the bar of the Greek community to buy a bottle of soda. I was absolutely speechless. How is it possible this person to be diagnosed with this syndrome and has the problems she says?

The same thing I kept wondering all the next months that I was getting to know her better and better. If I wasn’t seeing from time to time her hearing aids on her ears and her cane – a special walking stick – I would have thought that she is fooling us. My disbelief reached its’ highest level when I saw her celebrating Greek Easter in the offices of Greek community and dancing passionately Cretan traditional dances. Honestly I couldn’t find a moment of difficulty or difference in her moves compared to the other people that they were dancing at the same time. Many friends were absolutely surprised when they were informed that Afroditi has a problem with her vision and hearing and can still dance like that. It was that night when I completely realized that there was a really special person in front of me who I wanted to “discover” little by little in the best possible way.

“Will you give me an interview?” I asked her one day when we went out for a coffee and then we ended up eating fruit cake in her place. “Interview?” she asked me with a puzzled face. “Yes, an interview” I said again with more excitement than before. “We will talk about Usher, you will tell me your experience and how is your life with it” I explained to her. “Then we will publish your interview in my blog in order to be read by people who are diagnosed with Usher Syndrome or people with various problems of their vision and/or hearing. Moreover, it is equally important to inform healthy people about what exactly is Usher Syndrome and how a person who is diagnosed with it could live his/her life decently. You could give a very strong message of life and hope if you just speak for your life and if you show to others that you are able to manage the whole situation” I ended up and then I remained silent and I was impatiently waiting to hear her response. Very soon she seemed to make a decision and without much hesitation she answered: “I don’t mind giving an interview. In the past I was embarrassed to talk about me and the syndrome but I don’t feel like that anymore”.

Some days went by and I began to read about Usher Syndrome while simultaneously I was trying to find some good forms of interviews – especially of people who describe diseases –and in this way I started beating the questionnaire that I would use during in our meeting to get a decent and comprehensive interview. I am not a doctor, no matter how much I read about this syndrome I couldn’t read all the studies that have been conducted during last years. Additionally, I didn’t have the experience of taking an interview from a person that has been diagnosed with a serious disease. In the end, I don’t know if I managed to take a really “useful” , comprehensive and complete interview. On the other hand, I am sure that I got a real and spontaneous interview by a determined woman who wanted to speak and share her personal story, how she “sees” and “hears” Usher Syndrome in her body all these years.

I changed this interview as less as possible since the biggest advantage of it is its’ authenticity. In the following document you will read how is the life of a person who has a genetic syndrome, who lived in three different countries, who visited many doctors and who has experience from different health systems. Afroditi is a young, bold woman who managed to live her life in the best way she can as she simply chose to “have the disease, but not to be the disease”. That’s why it is so important her story to be read and heard.Read More »

Thoughts about death

"Human beings are cute, when they are humans"
“Human beings are cute, when they are humans”

One of the most difficult subjects to discuss or maybe the most difficult of all is the one of death. Death and love are the two common issues in every human life. Yet death instead of love remains most of the times an unbelievably difficult subject to see it in a clear way, to understand it and even more to accept it. Death is the proof that the most frequent, common to all human beings phenomenon cannot be acceptable even if we claim that we are prepared for it. The truth is that no one can be absolutely ready to experience death – their own death or someone else’s death.

The most difficult course during my bachelor studies in Psychology was a selective one (we were not obliged to follow it, it was our choice to have it or not) with title “Psychology of death and mourning”. I remember that I chose to take that course together with some other selective ones with more pleasant and optimistic titles which were about pedagogy, motherhood etc. I can still remember that it was the only course that I wanted to pass it in the first exam period, not because I was bored to read again the same stuff but because I had the feeling that I couldn’t read again all these incredible and unbelievable information regarding death. I have memories of myself crying for about two days before the exams. I cannot say that what I was reading was unpleasant. It was something more, something much deeper: It was painful. I was feeling pain while I was reading about death, I was full of tears when I was reading stories of loss of various people. The mourning which was coming out of the pages was enough to feel my bones “hurt”. Are there psychologists who choose death as a subject of their studies and job for their whole life? That is something that until nowadays makes me wonder and also admire some psychologists.Read More »

Short movie “Slap her”: Do boys slap girls?

In the following video we watch a social experiment in which the participants are children.

Some boys answer personal questions in front of a camera (what are their names, their ages and what are the professions of their dreams). Then, they meet a girl and they have to say what they like about her, they have to touch her and make a funny face to make her laugh. In the end, boys are asked to slap this girl, really hard. What are their reactions?

A wonderful video which declares in the most touching way how repulsive is violence against women. Children seem to know that “women shouldn’t be hit, not even with a flower”. What about the adults?

Short film against bullying

A really brilliant idea of an organization against bullying of chidren and adolescents (Singapore’s Coalition Against Bullying for Children and Youth) to publish a short film which getting smaller everytime someone shares it. This really smart idea of dicreasing the video duration each time (0,001 second with every share) is directly related to the name of the campagne: “Share it to end it”.

Bullying is a timeless social phenomenon which unfortunately experience many children and adolescents in this world. Different kinds of bullying could lead a child/teenager to various situations e.g. depression, panic attacks or even suicide. People who are bullying victims usually don’t talk about their negative experiences and feel helpless. But no one can help a bullying victim if he/she doesn’t know for sure that someone is a bullying victim! That’s why we should not be afraid to say that we are victims of bullying! The campaign is clear about it: “We can end bullying by talking about it”.

Stanford prison experiment

Stanford prison experiment is one of the most well-known and important experiments in the field of Social Psychology. The experiment occurred in 1971 at the Stanford American University, in California. Head of the researchers was psychology professor Philip Zimbardo.

Experiment’s concept included some participants enclosed in a mock prison for 14 days (which was situated in University’s basement). The basic goal of Zimbardo’s team was to research possible psychological effects of prison to “guards” and “prisoners”. The research team was expecting that both teams (“guards” and “prisoners”) would be separated in two other categories based on their personalities. In other words, Zimbardo was expecting to see “tough guards” and “compassionate guards”, as well as “obedient prisoners” and “resisters prisoners”.

The twenty four participants were selected with regard to their clear criminal record and absence of any psychological or physical problems. Then, they were randomly separated in two groups (“prisoners” and “guards”) and soon the experiment began. The “guards” started “arresting” the prisoners and they led them to the mock prison. The “prisoners” had been treated as real arrested criminals (i.e., “guards” commanded them to take off their casual clothes and to put on prisoners’ uniforms) in order to feel immediately that they are in a “real” prison where they receive orders.

“Guards” had a specific behavior with regard to the instructions that received to keep the “prisoners” in order, while the “prisoners” knew that they had to obey in orders. Into the following days the “guards” were calling the “prisoners” by using numbers and not their names. “Prisoners” were receiving hazing and psychological pressure by the “guards”. They were often awaken during the night for no reason, they could have been left without food for many hours and moreover, “guards” were often trying to ruin prisoners’ relationships.

From the second day of the experiment, a “prisoner” already started yelling that he cannot stand to continue and that he wanted to get out of the “prison”. Until the fifth day five “prisoners” were close to emotional breakdown as they had believed that they were living in a real prison and that they could never be free again. At the same time, “guards” were being more and more addicted to their roles and they did not want the experiment to finish.

Eventually, Philip Zimbardo stopped the experiment in the sixth day (and not the fourteenth as it was first scheduled) because the participants were not acting upon their roles but they were really feeling that life in prison was actually true. “Guards” developed a violent, strict, cruel and sadistic character as a guard’s uniform let them feel free expressing their roughness to the “prisoners” and moreover, they could not be blamed for any of their actions (as they were just pretending to be something that someone else asked them). Respectively, “prisoners” who were acting with obedience they quickly felt trapped, abandoned, under the pressure of a great authority which could not be controlled by them.

Zimbardo’s experiment is really apocalyptic because twenty four prisoners really forgot that they were part of an experiment (nobody ever said “I quit the experiment”) and most of them believed that they were in a real prison with guards and prisoners. Actually this experiment confirms the hypothesis of many other experiments in the field of Social Psychology that people who have received power can usually adapt a sadistic behavior as they believe they are not responsible for their actions. Responsible is the person or the people who gave them the power and let them use it in a specific way (see “Miligram’s experiment to obedience”). On the other hand, when people should obey a “great authority” – even an irrational one –  maybe at the beginning they will refuse to follow orders and they will not “surrender”, but later they will probably feel trapped, illiberal and totally weak to go against the “authority” who “imprisoned” them.

Milgram’s experiment on obedience to authority

A very classic experiment of Social Psychology which nowadays is considered as unethical is the experiment of Stanley Milgram. During the ’60s Milgram as a professor of Yale University decided to research if the tendency of someone to obey to an authority is a matter of character or if it has to do with other, extrinsic factors. With this research Milgram wanted to understand better the answers of the military service and the guards who were working in the camps during the period of Nazi Germany. Those guards and military service were asked in the past why they have killed so many innocent people. Their answer was that they were not they who killed but their leaders killed those innocent people. Moreover, they were claiming that their behavior was analogous to the orders they were receiving which they should follow without any doubt in order to be considered as really consistent with the duties that were given to them.

Milgram with this experiment speaks clearly about human soul. He clarifies that people are not separated in two groups: “good guys that will never kill” and “bad guys that are born to kill”. Every human being could be a possible killer if for example feels that they do not do a crime by themselves (absence of personal decision) but someone else has made a decision for the crime they do, so this someone else is responsible for this crime.

In Milgram’s experiment the scenery is simple and really well-organised: Two participants who know each other for the last minutes will play the “teacher” and the “student”. Researchers position them in two different rooms allowing them only acoustic contact (through microphones and heaphones) but not eye contact. Researchers inform them that the experiment investigates how easily can memory be improved. The “teacher” aims to train “student’s” memory. Every time that the “student” does not know his/her “lesson” the teacher punishes him/her with electric shocks. If the “student” continues to make mistakes, then the electric shocks become harder, so the punishment of the “student” is more strict. The “teacher” is obliged to continue the procedure no matter if he receives or not answers from the “student”.

Miligram’s results were interesting and shocking. Milgram found that no matter how bad every “teacher” was feeling during the procedure regarding electric shocks, the experiment was being continued until the end. Many teachers made complaints, felt uncomfortable or guilty and almost all of them looked many times the researcher/proffesor or asked for help, explanation or exemption from the experiment. The researcher/professor who was sitting close to them inside the room was always saying the same phrases like “You should continue the procedure” or “The experiment requires that you go on” without any other explanation or encouragement to the “teacher”. So, most of the “teachers” found the whole procedure really unpleasant but under the “pressure of science” they kept doing electric shocks to unknown innocent people. They were believing that it was not their own intention to  kill somebody (but someone else’s) and the only thing they were doing was to obey to authority without any other option.

To conclude, Milgram showed that Nazi guards and military service were not the “human monsters” in the whole world history. They were just people that stopped communicating with any emotion of guilt or responsibility in order to continue killing people and staying calm. This can also been done from many other people in any country, in any time. If a person is persuaded to obey blindly to someone that seems “good” or “better” then he/she is capable for anything, without any emotion to blame himself/herself.

As for those who  resist to authority: They will quickly understand the irrational order they receive. They will try to stay away from the pressure the authority puts them (probably because they don’t feel in a pleasant way or because they feel afraid that they will do something they do not desire). Moreover, it is possible that they will try to challenge the validity of the authority and the whole procedure.  Humans that will finally refuse to continue the procedure of the experiment are probably individuals with high empathy, independent personality, strong opinion and antisystemic ideas about life.



The Asch Conformity Experiment

Asch’ s experiments are some of the most classic experiments in Social Psychology field. They are laboratory experiments which were conducted in the ’50s. The goal of those experiments was to show that humans tend to conform with the social attitude. Even if a human does not agree with community, even if he/she has a different opinion, he/she will conform with others’ opinion and will in order to avoid receiving their disapproval/persecution. More specifically, Asch proved in his experiments that humans even if they know that they are right they will start having doubts about their opinion/capability/perception in order to come close to opinions of majority.

Aditionally, Asch proposed two methods to decrease social pressure, therefore to decrease the possibility of conformity with the social attitude. The first method was about the “ally” who is instead community’s opinion and agrees with “black sheep’s” alternative opinion. “Black sheep” automatically has positive emotions for “ally”even if they did not know each other some minutes ago. At the same time the sense of social pressure disappears and person has again the feeling that is free to think/speak/behave (if someone else acts in the same way  “black sheep” feels again that behaves normally). The other method of Asch has to do with the withrawal of conformity through the “secret” expression of individual’s personal opinion. In other words Asch proved that the person who is free to judge and express his/her opinion without receiving any critique from the rest people, he/she usually says that he/she really believes without fear and continuous tendency to conform.

Asch’s experiments matches with the big question: “We are what we are because of our choices or our influences?”. If Asch was here probably he would answer: “It depends to the circumstances that we are asked to answer or to decide about something”. Really, what do you believe?

To be a human

This video below reminded me the lyrics of a greek song. At some point the singer says: “Learn how to be a human and you don’t need Gods”. I agree with that. Nitsche would agree even more. That’s why I want to share this really human and touching video with you. Images will “say” much more than me.

“A class divided”

What is racism? Who is racist? What do we know about a racist behavior? Have we ever behaviored in a racist way? How easily somebody can become a racist? How easily can somebody understand the ugly truth?

One shocking experiment which was conducted in a school in Iowa in 1968 gives answers about all the above questions. It is really easy to make a kid accept racism but similarly it is really easy to learn to a kid how to love. All a kid needs is a real teacher who will say clearly the truth, with courage and determination.