TDDPirate’s Ideas

Other people blogged about the conference, so I’ll be very dry and technical.

I served as the accessibility coordinator of the conference.  In addition to myself, I arranged for accessibility for two more people with disabilities - blind woman and a deaf+parapelgic man.  I reached the trivial conclusion that it was much easier in previous years, when I needed to arrange for accessibility only for myself.

IRC

Before the conference, it was suggested that we’ll try to arrange for lecture transcript straming to the Internet, to benefit people who cannot attend the event in person.  I bought into the idea when I realized that it would make the lectures accessible to deaf-blind people, who bring with them laptops with a Braille display.

Originally, I thought that I’ll not have the time to figure out the technical details.  However, since I was laid off two weeks before the conference, I had ample time to deal with the challenge of lecture transcript streaming.

During those two weeks, I went through the whole process of evaluating and selecting a transcript streaming method, and settled on IRC.  Then, I evaluated few IRC clients, until xchat was chosen.  Finally, I figured out how to configure the IRC channel to meet our needs.

However, all those efforts came to naught because the wireless network at the conference blocked IRC and opening IRC had to be arranged ahead of time instead of at the last minute.  Alternatively, I could have used a wireless modem, but I was not prepared for this.

The chosen IRC client had the problem of wasting columns on uninformative nickname of the speaker on the channel being followed.  For the next August Penguin, a special-purpose client should be developed.  It will take care of all details of reserving a channel and it’ll allow text entry and display in an optimal way for the task (lecture transcribing and real-time streaming of the text).

During the process, I got help from several people.  A thank-you letter should be found in the archives of the discussions@hamakor.org.il mailing list.

Other Problems

In addition to the IRC problem, the laptop got stuck once, losing the transcript of the quick lecture about Free Software in Education.

The notetaker and the deafies sat near one of the lecture hall’s entrances, and it turned out to be a noisy place until the door was closed.  As a result, the notetaker missed parts of what was being spoken in the lectures.

As far as I am aware, everything else worked flawlessly.

Power Splitter

I brought with me a power splitter with three sockets.  I was amused to notice that people with laptops, who sat near us, needed the electrical power to recharge their laptops.  So all three sockets were in use.

Today I was in Memograph in Petah Tikva, a medical diagnostics institute to which my health fund refers patients who need to have their ankles (and some other body members) X-rayed or subjected to ultrasound examination.  I needed to have my ankle X-rayed.

I arrived at the place to find a long and overdue queue.  The delay was about an hour and half.  I gave the X-ray requisition form and Form 17 to the receptionist and told her that I am deaf.

Then I waited.  The wait was made more bearable thanks to the coincidence that three other Deaf men came for their own tests, two of whom I already knew and the third was a new acquaintance for me.  It was nice to pass the time chatting with them.

About the time I was due to enter the X-ray room, the receptionist surprised me by trying to hand over to me a CD which purported to have already contained my X-ray photos.  I protested and explained that I was not examined at all.

After some investigation and head scratching, it turned out that the X-ray technician called out for a Zak.  The receptionist did not realize that my shoulder needs to be tapped.  So another Zak got in - Peretz Zack, who by coincidence needed to have his ankle X-rayed as well.  His ankle was X-rayed according to the instructions in my form and he left soon afterwards.

After the confusion was clarified, I was called in and had my ankle X-rayed.  Some time later I got the CD and analysis results - which I hope that they indeed correspond to my own ankle rather than to Peretz Zack’s.

As I walked back home, I analyzed the event.  The mistake was due to the following:

1. The patients have their paperwork taken by the receptionist, who hands it to the X-ray technician.  When a patient enters the X-ray room, he is not positively identified by the X-ray technician as corresponding to the paperwork waiting for him inside the room.  A post-it paper with the patient’s name given to the patient in exchange for the paperwork would have solved the problem.
2. The receptionist was not trained to warn the X-ray technician NOT to use the public address system to summon a deaf patient, but rather to have someone tap on his shoulder.  This is more tough one, given the relative rarity of deaf patients.  Today’s get together of 4 patients was probably once in a lifetime coincidence.

From now on I’ll probably have to be on the lookout for medical records really belonging to Peretz Zack, which got into my medical files because he, by mistake, somehow assumed my identity.  At least until the medications, which I take due to my heart attack, kill him.

More accurately, first anniversary of my catheterization.

A year ago I worked in a place whose management style was far from being the right one for me.  Communications with the boss were throttled down because of a disability which made it difficult for him to type to me for long time, I was not granted adequate autonomy to do my work in a way comfortable for me, various measures which I suggested to make it safer to upgrade software were not taken, microscheduling was rampant, I was in anxiety.  I stayed on because of the standard advice not to leave work before lining up other work in its place.

Eventually I could stand it no more and resigned.  However my contract called for me to stay one more week to transfer my know-how to my successor.  I stayed for one more week, and noticed that I don’t feel well each day in the morning.  I had some strange pain in my chest, pain of the kind which I never felt in the past.  Drinking hot tea eased the pain.  I attributed this ill-feeling to work related anxiety.

At last, the week was over, but I still did not feel well in the morning of July 2^nd, 2009 even though my last day of work was the day before.  So I decided it’s time to visit my primary health care provider (Kupat Holim).  My ECG was taken and there was something was abnormal with it, but still ambiguous.  My family doctor asked me some questions and finally told me to go to hospital for more tests.  I was advised not to take the bus but drive there by my car.  I preferred to take taxi instead, as otherwise there’ll be a problem with my car’s parking if I have to stay longer in hospital.

In the Golda-Hasharon hospital’s emergency room, my ECG was taken again and my blood was drawn out for some tests. Some time later, a nurse came with a big (300mg) aspirin pill and oxygen bottle. I was told to chew the aspirin pill and leave the mess below my tongue.  I also was to breathe oxygen.  Finally I was informed that they suspect an heart attack.  The curious thing was that when I was in the hospital, I did not feel pain.  Few days later I got the documents with blood test results, which showed that my blood had troponin, a marker for destroyed heart muscular tissue i.e. heart attack.

I was then carted off to the cathlab.  While en route I was given the authorization forms to sign.  The warnings section had gems such as death, serious disability, heart attack, etc.  In the cathlab I noticed the label “Mennen Medical”, a company for which I worked years before, developing software for one of their products - a computer which is used for collecting and analyzing data in…cathlabs.  It reminded me of the sign in IAI (Israeli Aircraft Industries) asking the employees whether they would agree to fly on the screw they are manufacturing now.  However I do not think that my own software was actually used during the procedure done on me.  I was a relatively easy case.

The catheterization procedure was carried out while I was awake and I could follow the displays (but not fully understand what is going on).  I did get local anaesthesia in my crotch, where they inserted the catheter.

After catheterization, I was carted off to the cardiac intensive care unit, where I was to spend the next four days.  Eventually I was informed that I had one blocked coronary artery, and the blockage was easily opened using a balloon and a stent was placed there.

I did not realize at first my condition, so I naively asked whether and which of my plans for the night and the next few days need to be cancelled.  It emerged that I do have to cancel all plans, including a trip to England which I planned to have a week later.  My Nokia 9210i cellphone, even though not in good condition, proved to be real boon during the first several hours after catheterization.  I was able to send a FAX message to my travel agent to cancel my trip, to send SMS messages to several people with whom I planned to meet or chat during the next few days, to update my long distance girlfriend about my situation.  It did feel weird to be almost as active as I would be if I were working, so short time after catheterization.  However it didn’t require me to exert physical effort so it was OK.

During the first night of my stay in the intensive care unit, a symphony of pains played out throughout my body.  The hole in my crotch, where the catheter was inserted, was being closed by pushing a ball against it.  It is a challenge because the hole opens into a major artery and the blood partially lost its ability to clot due to medication - the conflicting requirements are that on one hand, clotting will form in the hole, but on the other hand - not in or around my heart.  Pain one.  Pain two was the pain of hunger, as I was not allowed to eat much during the first several hours after catheterization.  The third pain were the chest pains as arteries rearrange themselves to deal with the changed conditions as the blockage was opened and the stent was inserted.

Days passed and gradually the antibiotics infusion has ended, I got more or less regular meals, I was allowed to walk to the restroom.  One thing worried me.  I knew that I have essentially to enter a new culture, to learn its ways and habits, to learn what to eat and what not to eat, how about physical exercise, what medications to take.  So when the woman in charge of educating new cases came with booklets, I was glad about this.  She left me with several booklets and I spent the last two days in intensive care reading those booklets.  Meanwhile, a technician with portable ultrasound machine came and scanned my heart - turned out that my heart retained practically all its functionality - my heart attack was really minor.  In other words, I got out of it cheaply.

When I was due to be discharged from hospital, there was some concern that the hole in my crotch did not close properly.  However an ultrasound scan cleared this question and I was discharged.

When I was discharged from the hospital, a friend took me home where I took a shower (at last!) and checked my E-mail backlog.  Nothing urgent, but lots of spam.  Fortunately my E-mail inbox still had room for several E-mail messages when I checked it.

Then my friend took me to a pharmacy to obtain the medications prescribed to me and from there to the medical hotel where I was to stay during the next 5 days.  The hotel has a cardiologist and a nurse available all the time, and my ECG and blood pressure were taken each day, sometimes more often than that.  There were also lectures, and in two of them the lecturers made the effort to make the subject accessible to me.  One lecture was about the medications we are now obligated to take, and the other - about the kinds of foods we may eat and those that we should avoid.

Turned out that I need to avoid milk chocolate, one of my favorites. 

I was also to walk each day and to exercise lightly.  The walk times began with 10 minutes, two times a day, gradually increasing during a month to an hour each day.

After my time in the medical hotel, I returned home.  At beginning I needed help buying food, because the supermarket was too far away for me to safely walk to it.  However, after a week at home I already could walk to the supermarket and fully take care of myself.

Near end of July, one morning I felt strong nausea.  Again to my primary health care provider and then to the hospital’s emergency care.  This time, my blood proved to be troponin-free.  My nausea also ended while I was in hospital.  It was a false alarm.  I got discharged after about three hours and went to have a lunch in a fast food Chinese restaurant.

I did not return to work until beginning of August, at which time I started working for another company.

At end of August I had argometric test, and at beginning September I started my visits to the heart rehabilitation institute, twice a week.  Heart rehabilitation consists of exercise, which gradually and slowly gets more and more strenuous. I was pleased to meet an old acquaintance, someone who was and is active in the Association of the Deaf in Israel, in my group.

I am left with the feeling of having gotten prompt and good service from the clinic, hospital and medical hotel.  Several months later I had a chat with someone who was having excruciating back pain.  She told me of all the waiting times she needed to wait before CAT scans, biopsies, etc.  I told her “next time, get a heart attack instead, and they’ll attend to you promptly”. 

Nowadays I go with three 100mg aspirin pills and an up to date ECG together with my money, keys etc.  If I get another heart attack, the aspirin will weaken the clot and the ECG will make it faster and easier to diagnose my condition.

In the wake of the Rav Moti Alon scandal, I reach the conclusion that homosexual Jewish rabbis and Moslem religious leaders are in the same risk category as Catholic priests.  The common difficulty, which all of them encounter is the lack of a legal (from their religion’s perspective) means to satisfy their desires.

The story starts at the late 1980’s, at which time I did my M.Sc. work under Prof. Jacob Klein.  It was a strike of luck for me, as I did not set out to look for a top notch advisor, but ended up having such an advisor.

Twenty years later, as one of his former M.Sc. students, I was invited to a workshop, which was dedicated to his 60th birthday, and which was held between 21-23 June this year.  I was happy to attend it, soak some science, and meet old acquaintances.

The workshop was relatively small and intimate.  There were few tens of participants, and several of them also lectured and presented posters.  Most of them were students, collaborators or colleagues of Prof. Klein.  At the workshop’s end, people remarked about the high quality of research described in the lectures.  Scientists were also not afraid to venture forth from their zones of comfort and discuss also subjects about which they did not have all the answers.  So one could notice that some post-lecture questions were answered by “I do not know”.

Rachel Yerushalmi-Rozen, one of the workshop organizers, arranged for me full coverage of notetakers so that I could follow all lectures.  They did good enough work so that I was not bored, even though fundamental cognitive and motor limits of humans prevented them from writing down everything that was being said during the lectures.  The notetakers had to be proficient with the terminology used in the lectures, so they were students of the workshop’s organizers.

The first part of the workshop was held in Schmidt Auditorium in Weizmann Institute of Science, and when it ended, a group photo of the participants was taken.  Such group photos often end up in biographies of scientists, who participated in them.  The caliber of the workshop’s participants was such that several of them are current or future prominent scientists.

In one of the evenings we were treated to a dinner and a rare night visit in the Jerusalem Biblical Zoo (see also in the Wikipedia: http://en.wikipedia.org/wiki/Jerusalem_Biblical_Zoo).  After the night tour, still in the zoo, Prof. Klein blew out candles on his birthday cake and we were treated to a presentation of photos of highlights of his life, so that the 3-day workshop would qualify also as a birthday party.

Unexpectedly, the police found my stolen car. Then it took them five days to figure out that I need to be contacted via FAX rather than via voice phone call.

Appeal to all designers of forms and office procedures: in every place you ask for an applicant’s phone number, please allow for the possibility that he/she is having a FAX machine rather than regular telephone.

When I received the FAX from the police, it reminded me of situations, like the one depicted in Isaac Bashevis Singer’s book “Enemies, a Love Story“, in which one lost a wife long time ago, went on with life, remarried and then the lost wife showed up again. The car, which served me for several years, no longer had a place in my life.

The car was found at entrance to a settlement in Samaria. The police had it towed to a lot in Ariel (also in Samaria), which is used to store cars after accidents and after recovery from car thieves. I found that the car grew aerials - apparently to make an impression and discourage policemen from stopping the car and closely inspecting it.

Today I disposed of the car for a pittance, after having gotten an offer from a company, which buys cars for disassembly and disposal. If I were to leave the car there for few more days, while trying to round up better offers, I’d have to pay 90NIS a day as storage fee, from which only the first two days are free.

Thankfully, the official bureaucracy involved in selling off a car for disassembly consisted only of one form, filled by the lot’s attendant. If the car were to be returned to regular use, I and the buyer would have had to go to the local police station and arrange for a “car release form” (whatever it is).

A cellphone and people, who relayed for me FAX and SMS messages (first of all, my father), were instrumental in speedy resolution of the above.

Last Wednesday evening, the Institute for the Advancement of Deaf Persons in Israel together with some partners (Joint Israel, Joint USA and Globes) launched the Sela information Web site in memory of Dr. Israel Sela. The event was held in Danny House, Hatikva quarter, Tel Aviv. At this opportunity, the Institute also celebrated its 13^th year of existence.

The new Web site is intended to be a portal for information and news, which concern the Deaf Community in Israel.

In this event, I saw several faces, which I saw also in the commemoration event two evenings earlier in the Deaf Club in Holon.

The evening started with the obligatory speeches by representatives of the partners to the Web site. Some of them told us about some of their memories from working with Dr. Israel Sela. Others - about the ideology which promotes integration of deaf employees in workplaces.

Guy Saad, vice president of business development and Internet in Globes, told us about the following saying: “Someone, asking for something, may be silly for five minutes. But someone, who is not asking for anything, will be silly all his life.” This was in the context of the story about a deaf person, who was laid off, after holding a job for 18 years, and then searched 4 years for another job.

The evening did not consist only of obligatory speeches and presentation of the new Web site, but had also an academic part and an artistic part.

The academic part consisted of a lecture by Dr. Gilad Ravid from Ben-Gurion University about dealing with information overload by the individual and the community. Some figures from his lecture: the amount of saved information created each year by humans is about one hexabyte (10¹⁸ bytes), which is equivalent to about half a million times the information in the American Library of Congress. The amount of information created but not saved (phone conversations - voice and FAX, TV broadcasts, E-mail, etc.) is about three times larger than the above.

The per capita information is equivalent to a full CD-ROM per year per capita. A single weekend issue of Globes has information equivalent to all information, to which a 17^th century man was exposed during lifetime.

During the last few years, there were few information provision developments in the Internet - Wikis and blogs. Information consumption technologies were developed as well - search engines, recommendation systems (such as Amazon), tags (such as del.icio.us). Another development was in balancing between pull-type information and push-type information.

The lecturer spoke also about research of the response of virtual communities to changes in information load - both downwards and upwards.

The artistic part of the evening consisted of two stories told by two Deaf storytellers, who rendered their stories in Sign Language.

On the evening of the Holocaust Remembrance Day, a special memorial event was held in the Deaf Club in Holon. The event commemorated the Deaf victims of the Holocaust and celebrated those who survived the Holocaust, some of whom were present in the event. It was the first time such a special event was held.

The Neve Arazim Community Center hall, in which the event was held, was full and several people stood due to lack of sitting places. It was noted that not only elderly people came, but also young people, who showed interest in the Holocaust.

After the compulsory standing up in memory of the Holocaust victims, we were treated to a series of lectures and stories, culminating at screening of a short movie.

First of all, a short lecture by Miriam Aviezer, a documentarist from Yad Vashem. She discussed the relatively new project of getting testimonials from Deaf survivors of the Holocaust. So far twenty stories were videotaped. There are more survivors to be reached.

The next speaker was Joseph Komem, CODA (hearing child of Deaf adult) who survived the Holocaust thanks to a Deaf Polish friend of his father.

The academic lecture was delivered by Dr. Amatzia Weisel from Tel Aviv University. He discussed the slippery road, which started with the Eugenics movement in USA. Between 1933-1940, about 350 thousand people were sterilized in Germany, under the 1933 law for improving the race. Later, between 1939-1941, under Operation T4, about 250 thousand German children with disabilities were killed. The organizational methodology and technology developed to get rid of them was used later to kill millions of Jews.

In the 1920’s, there were more than 800 teachers in German Deaf schools, and they taught 6000 Deaf students each year. Thus, the German Deaf were taken care of and were educated. However, ten years later the tide public opinion went the other direction - in support of sterilizing and exterminating them. The first leaders of the Israeli Deaf Community were former students of German Deaf schools.

The slippery road starts with the idea that person A assumes the right to decide if the life of person B is worthy of being lived. He who begins to rank people according to importance of their lives, ends with execution of hundreds of thousands of people. There was a famous German doctor, who proposed to sterilize almost 30% of the German population and to exterminate part of them. The eugenic ideology took root in public opinion because it was supposed to help the Germans win the war and strengthen Germany.

We must remember and never forget that all humans were created in God’s shape.

The next speaker was Hava Savir. She and her husband knew personally some German Deaf persons, who were sterilized.

The last speaker was Jacob Ehernfeld, a Deaf holocaust survivor. He told the tale of his Holocaust experience and survival. He finished his lecture with a moving tale of his reunion with other survivors from his group. He was the only Deaf in his group, and taught his fellows Sign Language, and those who survived still remembered the signs fifty years later.

The evening ended with screening of a short movie, produced by Ido Granot, about a trip of a group of Deaf persons to the concentration camps in Poland at 2001.

The memorial event was organized by The Institute for the Advancement of Deaf Persons in Israel in cooperation with the Deaf Club in Holon.

Johan Hammarström is a Swedish hard of hearing pilot. His life dream was to be an airplane pilot. His initial attempts to apply for pilot license were thwarted because his hearing loss is about 65dB. Regulations in effect at the time allowed maximum hearing loss of 45dB.
He fought the authorities, and was successful in getting permission to have pilot license after an audiologist tested him and proved that he can clearly understand instructions from control towers under the circumstances in effect in airplanes.

(In USA, there are deaf airplane pilots. But they are restricted to flying in areas without radio contact.)

Now, Johan Hammarström is flying around the world and is trying to raise consciousness of the world to the hard of hearing, and to raise the aspirations of hard of hearing youths.

Today Johan Hammarström is in Israel, about two weeks after starting his journey.

This evening (27 March 2006) he gave a presentation about his project and his struggles in Bekol’s Wolf Chagle’s center of accessibility for the hearing impairment. The room was packed full with attendants. Two people from the Swedish embassy came as well. One of them told us of her childhood experience with fingerspelling signs and how the hearing schoolchildren learned them in order to communicate without the teacher noticing.

Hammarström’s presentation was made accessible by assistive listening devices (for those hard of hearing, who understand English) and by a notetaker who listened to the English lecture and typed in Hebrew (for the deaf and/or those who do not know English).

Addition from April 4, 2006: an article in Haaretz’s Web site about Johan Hammarström.

Tomorrow, Monday 9 January 2006, the organizations of and for the hearing impaired in Israel will hold a memorial event (combined with demonstration) in memory of Shmuel Katz Z”L, who was killed a month ago in a train accident, whose root cause is lack of accessibility of the train to people with hearing and sight impairments.

The memorial event will be held at 18:00 in the entrance to the Hagana train station, Tel Aviv.
Few weeks ago, I wrote about the accessibility problems of Israel Railways.

The Web site of Israel Railways is at http://www.israrail.org.il/english/index.html. They list the following E-mail address for suggestions/remarks/comments: ayariv@rail.org.il.