Category: management

קבוצות תמיכה לאנשים על הרצף האוטיסטי

מאת: כרמית ויניק ועומר זק

הקדמה: בשביל מה צריך קבוצות תמיכה?

קבוצות תמיכה הן אמצעי יעיל להעצמת אנשים מאוכלוסיות מוחלשות, שמנסים למקסם את הפוטנציאל שלהם בקהילה. זה כולל בין השאר אנשים עם מוגבלויות שמנסים להשתלב ולהתקדם במקומות עבודה.

גם אנשים אוטיסטים הם אוכלוסיה מוחלשת. אבל מסתבר שעבור רבים מהם, השתתפות בקבוצת תמיכה היא בעייתית בפני עצמה.

במאמר זה אנו מסבירים מהם הקשיים שבהם נתקלים אנשים אוטיסטים שבאים להשתתף בקבוצת תמיכה. אנו גם מסבירים איך אפשר בכל זאת לעזור להם להפיק תועלת מאמצעי זה להעצמתם.

צריך לזכור, שבגלל השונות הרבה בין אנשים על הרצף האוטיסטי, טכניקה שמתאימה לאנשים מסוימים יכולה לא להתאים לאנשים אחרים.

התהליכים שקורים בקבוצת תמיכה שעובדת כמו שצריך

בקבוצת תמיכה שעובדת כמו שצריך, קורים התהליכים הבאים.

  1. המשתתפים בקבוצה מרגישים שמבינים אותם.
  2. כל משתתף רואה, שיש אנשים נוספים שמתמודדים עם אותו הקושי ויכולים לשתף מסקנות וטיפים. לכן יש ביכולתו לבחור לאמץ חלק מהם ולא לאמץ את השאר.
  3. המשתתפים בקבוצת תמיכה יודעים להעריך את ההתמודדות עם הקושי ואת המאמצים שמושקעים בהתמודדות איתו. וזאת בניגוד לסתם אנשים מהרחוב שאינם מתמודדים עם אותו הקושי.
  4. קבוצת תמיכה יכולה לשמש כבסיס לפעילות להעלאת המודעות בקהילה לקושי. הפעילות יכולה להיות ברמה של הפצת מידע ו/או ברמה של התארגנות למיסוד פתרון קהילתי לקושי.
  5. במקרים מסוימים, כשאי אפשר להתמודד ישירות עם הקושי, קבוצת התמיכה יכולה לתמוך בתחושת שותפות גורל, חוסר אונים והשלמה עם המוגבלות והקושי. זה עוזר על ידי הפחתת הלחץ הסביבתי על חברי הקבוצה להשתנות, מה שקודם לכן גבה מהם מחיר יקר.
  6. קבוצת תמיכה מסתמכת על קשרים, תקשורת ושיתוף רגשי.

הקשיים שבהם נתקלים אנשים אוטיסטים שמשתתפים בקבוצת תמיכה

בניגוד לאוכלוסיות מוחלשות אחרות, יש לאנשים אוטיסטים קשיים בעצם ההשתתפות בקבוצות תמיכה, הן בקבוצות מעורבות של אנשים אוטיסטים ואנשים נוירוטיפיקלים והן בקבוצות ייעודיות של אנשים אוטיסטים.

קודם כל, רמת הקושי של אנשים אוטיסטים בקבוצה חברתית היא מראש יותר גבוהה. אבל יש אנשים אוטיסטים, שאין להם רמות חרדה גבוהות, ואז הם יכולים להפיק יותר תועלת ממפגשי קבוצות תמיכה.

קושי שמתעורר בקבוצות מעורבות של אנשים אוטיסטים עם נוירוטיפיקלים:

  • קבוצות תמיכה מתבססות על תקשורת בין המשתתפים בהן. כאשר יש ציפיות חברתיות בלתי ממומשות ופער רגשי, זה מקשה על התקשורת.

קשיים שמתעוררים בכל קבוצות התמיכה שבהן משתתפים אנשים אוטיסטים:

  • קבוצות תמיכה מתבססות על תקשורת בין המשתתפים בהן. לכן, כשיש קושי בתקשורת בגלל האוטיזם, זה מפריע לתפקוד קבוצות התמיכה.
  • כדי להשתתף בקבוצת תמיכה ולהפיק ממנה תועלת, צריך רמת תפקוד מינימלית מבחינה רגשית וחברתית. זה בדיוק מה שאין לאוטיסטים.
  • כדי להתמודד עם קבוצה במפגש של קבוצת תמיכה, צריך רמת סף מסוימת של חסינות רגשית, שאין לאנשים אוטיסטים רבים.
  • חוץ מחסינות רגשית, יש גם יתרונות נוספים של תקשורת ברמה שקל לאנשים נוירוטיפיקלים להגיע אליה. לאנשים אוטיסטים רבים, רמה זו של תקשורת היא חלום רחוק.
  • כשאדם אוטיסט מגיע לפגישה של קבוצת תמיכה, הוא רואה מבטים ורמות החרדה שלו עולות.
  • בפגישה של קבוצת תמיכה, אדם אוטיסט גם מרגיש חוסר בטחון.
  • יש הרבה דברים שמלחיצים אדם אוטיסט בפגישות של קבוצות תמיכה:
    1. לחץ בגלל צרות של אחרים
    2. עודף אחריות על אחרים
    3. צורך לשאת עליהם גם את המצבים הרגשיים של אחרים, גם אם הם לא יודעים לפתור את המצבים הרגשיים שלהם עצמם.
    4. חוסר יכולת להפריד – מבחינתם, המצב התקין הוא מצב לא מופרד.

קושי נוסף שיש לאנשים אוטיסטים רבים זה חוסר נכונות לשתף במה שקורה להם ומה הם מרגישים. לקושי זה יש כמה סיבות:

  • להגן על עצמם.
  • להגן על אחרים.
  • לא יודעים אם האחרים באמת מסוגלים להכיל את מה שהם עצמם לא מסוגלים להכיל.
  • הם מניחים, שמה שגורם להם להרגיש רע – גורם להרגשה רעה גם למשתתפים אחרים.

תוצאות של הקשיים הנ”ל

בגלל כל הקשיים הללו, עבור אנשים אוטיסטים רבים, עצם המונח “קבוצת תמיכה” הינו בדיחה, כי הקבוצה מייצרת כל מיני הצפות רגשיות.

כשלא דואגים להנגשת קבוצת תמיכה לאנשים אוטיסטים, כל פעם שאדם אוטיסט יוצא מפגישה של קבוצת תמיכה, הוא מאוכזב, כי כל העולם אומר שזה עוזר, אבל הוא היחידי שלא מרגיש את התועלת. הוא מוצא את עצמו נאלץ לזרום עם הרעיון הטיפולי כדי לרצות את הזולת, או לייצר מחשבות קונספירטיביות על הטיפול.

טכניקות להנגשת קבוצות תמיכה להעצמת אנשים אוטיסטים

כדי לסייע לאנשים אוטיסטים, צריך למצוא דרכים לעקוף את הצורך בהשתתפות בקבוצת תמיכה עבור אלה שקשה להם מאוד להשתתף בהן. כמו כן צריך להנגיש אותן למי שיכולים ורוצים להשתתף בהן.

כאשר אנשים אוטיסטים משתתפים בקבוצת תמיכה, צריך לדאוג ל:

  • תיווך.
  • עידוד הפעלה.
  • תשומת לב מתי האדם האוטיסט מוצף מסיפורים של אחרים.
  • מישהו שילווה את האדם האוטיסט ויסייע לו לחזור לקבוצה או לפרוש.
  • תיווך ביצירת הכרות עם אנשים אחרים.
  • הכרה בשונות בחוזקות ובחולשות.
  • הבהרת גבולות, שלא תמיד מזהים אותם במצבים ותהליכים חברתיים.
  • הדרכה בהבנת ההגיון הרגשי.

כרמית ויניק ועומר זק פירסמו גם כתבה על שילוב אנשים על הרצף האוטיסטי בעולם העבודה

You feel guilty due to very high pay at work – what to do?

Say, you are being paid piece rate on work you do as a contractor. However your employer set up things in such a way that you are very productive. You feel that you are being overpaid and feel guilty about this.

What to do?

Do not suggest a reduction of your piece rate.

Instead of taking less from your employer, give your employer more.

Invest time at higher quality work even if it slows you down a bit. Do more work on your pieces. Look for ways to optimize even more the workflow in which you are a part. Train other workers to be more productive.

What to reply to a computer science student who asked you to be his accomplice in cheating?

You probably are familiar with the phenomenon of students, who pay other people to write term papers, theses and projects for them to submit in order to meet academic requirements.

Few years ago, a computer science student named R. (a pseudonym) approached me and asked me to write for him and his partner a computer program, so that they will submit it to meet a requirement in order to pass a course, which they were studying.

Instead of taking money from him, I replied to him as follows.

I am approaching your question from the point of view of a mentor, teacher or a wise person needing to advise a young person, who is in a difficult situation and who is considering a bad solution to his problem. What the young person really needs is not to have someone else do his project for him, but long-term thinking: what are the long-term consequences of this solution, what alternative solutions exist, which obstacles exist in the alternatives, how to overcome those obstacles, the need to summon courage to change course.

For starters, as far as I am concerned, what you asked for is in the grey area between cheating and having an original solution to the problem. This is because certificates are not worth that much in the vocation of software development. Either the developer knows how to program or he doesn’t know, no matter what degrees or impressive certificates he has. If he does not know how to program, then within half a year his employer, if the employer has a clue, knows about it, and gives him a kick in the ass – reducing the long-term damage. Also, there are several people, who take on big projects and hire other people to do the actual work. However, the difference is that they have to provide the project with services such as marketing skills, project management, search and selection of development tools, money handling, etc. – instead of (or in addition to) software development skills.

Now to the point. Before proceeding further with what you and your partner are contemplating doing – I highly recommend that both of you read Ayn Rand’s “The Fountainhead” and follow Peter Keating’s career development in the book. He started out relying upon other people, like you are contemplating doing, made an impression on the right people and reached the top of his profession.

But… he didn’t last long and eventually he fell. And the sad truth is that he trained for the wrong vocation. There was a vocation that suited him perfectly, and he could really excel at it, but his mother pressed him to learn the vocation he actually learned (and in which he eventually failed). The saddest thing about his story is that when he realized which vocation is right for him and started engaging in it – it turned out that he started it too late and could not reach a high level of proficiency in that vocation.

If you and your partner decide to pay someone else to do your project, then:

  • Anyone, who knows that you have done this, will be unable to help you look for a job, because they will have to lie if they vouch for your software development skills.
  • During software development work, there are periods of extreme pressure. Schools plan their course syllabuses so that an average student can handle the resulting pressure (with some sighs and groans). At work, pressure can be unlimited. So if you are unable to cope with pressure in school, it is very unlikely that you can cope with it at work. So you should consider a vocation, in which there is no such pressure.
  • You give up the fight to be really good professionals, who know when to accept failure like men (even at work there are some projects which fail, due to all kind of reasons, such as over-optimistic effort estimates, and it’s better to admit failure and move on to another project), and instead of accepting failure and its consequences, you are heading toward pretense.
What to do now?

I suggest that you first carefully review the decisionmaking process that led you to decide on a vocation in the software world. If you have taken psychotechnic tests and consulted with a specialist in the area of vocational selection, one of the tests was probably as follows:

  1. Go over a very long list of topics and highlight those which interest you.
  2. Group the interesting topics into groups, such that the topics in each group have the same theme from your point of view.
  3. Go over the groups and identify potential vocations related to each group.

Why am I telling you all this? Because if you kept the papers from your evaluation (or you can get them), you might find there a clue for identifying a vocation, which really attracts you and in which you can excel.

The next step is to determine if you have relatives, who are unwilling to accept that your future is not in the lucrative and profitable software world, but in another direction. Then check if and how to neutralize their influence upon your choice of the vocation that fits you.

I assume that the computer world is appealing to you, so you may want to check out some other vocations in this world besides writing software (I remember that in Hadassah Institute for Professional Selection Counseling in Jerusalem, where I did my vocational counselling, there was a library with descriptions of thousands of vocations – such a library could help you choose the right vocation for you). Examples: training, installation and configuring, software testing, maybe even administrative project management. Then go on to specialize in the vocation that suits you and in which you can excel.

True, you already started studying and already invested two years in your studies, and now I am proposing to write off all this investment and start over? Yes, however as far as getting a certificate or a degree is concerned, some of the investment will probably be lost. But as I said above, certificates are not that valuable in the software world. Like a pilot’s license does not turn someone, not having the aptitude to pilot, into an ace fighter pilot; also a software developer’s certificate does not turn someone not fit to be software developer into a great software developer. In terms of content – I’m sure you’ve learned something that will help you in any direction you choose for the rest of your life. And as far as the requirements for finishing your studies are concerned, once you know which direction is right for you, you probably can switch to a major which fits your vocational goals. In this case, you’ll probably be able to use some of the credits of the courses that you already completed. So what you already studied is not a total loss.

P.S.:

A student, who is paying someone else to do his homework, term papers, projects or theses, is like a basketball player who is paying someone else to go to his team’s practice sessions.

Orphan Technologies

Hi-Tech is failing people with disabilities

The other day, Nathan Zeldes wrote to me:

Between us, I’ve always been pissed off by the lack of progress in hi-tech solutions for severe handicaps; the fact that even the legendary Stephen Hawking was using a robot voice sounding like a Commodore 64 shows how little incentive companies (and society) have in driving leading edge solutions that could liberate people from severe disabilities.

To which I replied:

The problem is a lack of incentive to develop technologies which would help only few people. It just is not profitable. People cannot have a decent standard of living or support wife & children by working only on such problems. Subsidizing the development of such a technology could lead to the basic problem of socialism (possibility of turning a profit NOT by serving another person, the basis of “true” capitalism).

A similar problem exists with “orphan medicines” – medications and
procedures for treating very rare illnesses.

What could be done?

In discussions with Nathan Zeldes and with Dr. Yoav Medan (who is involved with the orphan technology of 3D printing of prosthetic hands), the following ideas were mentioned.

1. Students doing Final Projects

  • STEM students, who do their final projects, can profit from working
    on an orphan technology as their final project. The students provide
    a service and in exchange for it, they gain experience which will help
    them later make more money in their careers.
    However, most students cannot bring a product to market. The
    best they can do is to solve problems in a local and limited community.
  • People, who are not students, could gain both experience and reputation by working on such problems.
  • Companies could sponsor such projects, in order to get favorable
    advertising, improve their reputation, etc.
  • It would be a good idea to develop ways to quickly monetize experience/reputation to allow people to live well by doing those projects for a living.

2. Dual-use Technologies

For the deaf and HOH (Hard of Hearing), most of the relevant technologies happen to have dual use, starting from Alexander Graham Bell’s telephone. Robert Weitbrecht’s acoustic coupler was useful not only for allowing deaf people use teletypes over phone lines (and not only over telex lines) but also for other data communication users.

My personal experience was with adding Hebrew support to the Nokia 9110 and Nokia 9210 smartphones at the beginning of 21st century. Those cellular phones were very useful for the deaf in the pre-SMS era thanks to their ability to send and receive FAX messages. Since Hebrew support was useful also for Hebrew-speaking hearing people, it was a profitable endeavor for Erez Zino and me. See also: כנגד קול הסיכויים (in Hebrew).

A variant of this approach is for biotech and pharma companies, when developing a new technology, to first develop it to treat orphan/rare diseases. This gives them regulatory and reimbursement advantages. Once the technology is developed, it is applied also to common diseases, for which established therapies already exist.

An example is Minovia, which is developing a cell therapy technology to treat mitochondrial diseases. They began by targetting the Pearson Syndrome, which affects only 100 children worldwide.

3. “Micro-business” methodology and support services

Orphan technologies become orphan because the Hi-Tech world is based upon economics of scale. To develop a technology, you need a sufficiently big market to make it worthwhile. A business needs to have a minimum size to have any chance for success.

A methdology, infrastructure and support services to facilitate “micro-businesses” would overcome the above barrier. A micro-business would be a business, which does not require more than few hours a month, after some reasonable initial investment in building it, and would be very profitable (in terms of net income per hour) serving its very limited market.

One such possibility is to have spread out creativity centers (both physical and in the WWW) which help people develop their ideas. Examples: TAMI hackerspace and HAIFAUP.

4. Affluent end-users subsidizing the development

One could get affluent people needing an orphan technology to fund its development. Even if they are few, just one millionaire, with a child afflicted with the problem, could be enough to fund the orphan technology’s development.

Variations of this approach:

  • Government funding of technologies needed to rehabilitate army veterans with disabilities.
  • Collaboration with a non-profit devoted to the disease in question. Some of them have money or access to donors.
  • Philanthropic funding (from people not needing the orphan technology or themselves).
  • A variant of philanthropic funding is to use crowdfunding websites (Headstart, FundIt, PipelBiz, Indiegogo, KickStarter, etc.) to donate to a project.
  • Some companies declare upfront that they will allocate a certain percentage of their profits to social causes (including orphan technologies development), without expectation to make any financial returns.

5. Impact Investments

Some people invest not only for profit but also for social impact. They invest in underserved areas where they can see an eventual upside. An example is Social Finance Israel.

I feel psychologically unsafe when working in big corporations

Three times during my career, I worked in big corporations.

1. Intel – Haifa, Israel

First time, I worked in the Intel design center in Haifa, Israel. At the time, unlike today, the operations in Haifa were small.

I left work to pursue my M.Sc. after five and half years, during which time the operations in Haifa grew to employ hundreds of people.

With hindsight, it turned out that there was also a manager who wanted me out of Intel due to his own reasons.

2. SanDisk – Kfar Sava, Israel

Second time, I worked in SanDisk, Kfar Sava, Israel.

I noticed that I feel anxious all the time while I was working there. I left the job after half a year.

Among other things, I got into a serious disagreement with a manager in another unit about a problem, whose solution was critical to the success of an assignment that I got.

Reflections

Before accepting the job offer from Google Ireland (see below), I reviewed my experiences in Intel and SanDisk and made a list of recommendations how to improve my chances to be successful in Google.

One of the recommendations was to identify a high ranking manager, who is interested at helping smart deaf people succeed in their jobs in Hi-Tech companies, and who can advocate for me in case of misunderstandings among me and managers in remote units.

3. Google – Dublin, Ireland

Third time, I worked in Google Ireland. No high ranking manager was available to advocate for me as needed. I again was anxious all the time. I left the job after three and half months.

I chose to leave the job in lieu of accepting a demand that I apologize for a harsh but non-personal expression, which I said during a discussion about an accessibility problem in an American bank, which worked with Google.

I knew, without using the term psychological safety, that if I apologize I would not be able to feel psychologically safe if I ever have to point out problems with proposed plans or designs.

Background anxiety

The unending anxiety that I felt while working in SanDisk and Google was about fear of offending managers in remote units, whom I did not know personally, but with whom I had to interact to fulfill my work duties. I could not be confident that I would have the support of my own bosses if there is any problem with remote managers.

Now there is a research pointing out what I was missing during my work in SanDisk and Google. Ironically, the research was performed in Google about a year after I left the company.

High-Performing Teams Need Psychological Safety. Here’s How to Create It

The five keys to a successful Google team

An earlier version of this article was published in LinkedIn as: Psychological Safety – the reason why I did not survive in big corporations

A dose of the strongman medicine for USA? No, political education is better

USA is facing the serious problems of runaway public debt, overstretched army, and especially political machinery which is unable to effectively deal with the above problems.

Some countries and empires, at this stage of their evolution, got to be led by a strongman (dictator).  The dictator was either someone who rose inside them or someone who invaded the country (like Genghis Khan’s invasion of China).

In today’s world, the primary means of invasion is economic/political rather than by army force.  Army actions are now blocked by the existence of the devastating nuclear option, and by public opinion.  Soldiers, after all, are part of the public, and won’t fight unless there is enough public opinion backing war.

How would USA get out of the present crisis?

At 1985, Israel was going to have an economic collapse, of the kind that leads to dictatorship.  There were calls for a strongman to come to power and put matters to order.  Somehow, enough people of power were persuaded that something must be done and a new economic order was put in place and since then the economic situation improved in a big way (I am not sure that Dafny Leef and her cohorts would agree with me).

I do not see indications for such a political consensus in USA. What would then be a possible route to improvement in USA?  The two-party system is notoriously bad at allowing real leaders to rise to the top.  They must have all kinds of irrelevant qualifications, the inevitable skeletons must be well hidden in closets, they must be good looking and not be obese.  They must be excellent orators as well, and not start their adult career in an unacceptable profession (Ronald Reagan withstanding).

There is, however, another route to power in USA.  One makes a lot of money and leverages it for power in big Wall Street banks and other investment institutions.  That person (man or woman) would then be able to pull the strings behind the stage and push for the right kind of political changes.

A difficulty exists.  That person’s route to richness and power needs to leave him/her free of any commitments to take care of his/her Wall Street colleagues.  So that person would not be obligated to cater to Wall Street’s special interests.

Of course, since such a person would not gain power by democratic means, it is impossible to have an assurance that he/she would in fact operate for the good of the public rather than for any group of special interests. For such an assurance, the political process needs to work properly – and this failure is the underlying cause behind the present problems.

George Soros, anyone?

A better and safer alternative would be a massive educational process, which educate the populace about political processes, how they function, how they are supposed to function, how to wisely choose leaders, how to properly balance relatively minor improprieties vs. major leadership and management failures, how to tell legitimate criticism apart from propaganda by special interest groups, whose interests are damaged by a good leader’s efforts.

The hospital which demands that its surgeons operate in non-sterile theaters, with inadequate equipment and without enough help

If what Alan Carter says in his The Programmers’ Stone blog is right, then the way our society treats software developers is like requiring surgeons to operate in non-sterile theaters, with inadequate equipment and without enough help from other doctors and nurses.

What is the most important thing in administering a Linux (or any other) system?

Ken Hess listed 5 Things Every Good Linux Administrator Knows and left out the most important thing. It is more important than uptime. It is more important than controlling the network services. It is more important than making users happy. It is more important than documentation.

REGULAR BACKUPS!

UPDATE (2008 Nov 07):
A day after I wrote the above, Ken Hess added 3 More Things Every Good Linux Adminstrator Knows, the first of which is regular backups.

A Vista Conspiracy Theory

One possible reason for the stupidity of Microsoft in handling MS-Vista, especially in its attempts to ram MS-Vista through its customers’ throats instead of MS-Windows XP, is as follows.

Shortly after SCO sued IBM and other companies due to violation of its Linux copyright, IBM and possibly other big companies decided upon two-pronged counter attack.  First, they would fight SCO in court to the bitter end.

The conspiracy theory expoused below has to do with the second prong.  The goal here is to cause Microsoft to bleed as much money and as quickly as possible, so that it’ll not have the financial means to continue to support SCO until its defendants wear out.

For this purpose, moles may have been installed in Microsoft (or maybe Microsoft employees were bribed) to deliberately make the wrong managerial decisions, to sap the morale of the working software developers, to entangle the projects in cobwebs, to bog the projects down in intricate dependencies and frivolous compatibilities with the past, to surrender too easily to Hollywood moguls when they ask for DRM measures to be built into MS-Vista.

Since Microsoft had the fatal combination of de-facto monopoly position and huge cash reserves, both had to be attacked.  The monopoly position was attacked by making MS-Vista incompatible with MS-Windows XP, so that people would find it just as easy to switch to Linux or to Mac OS as it is to MS-Vista.  The cash position was attacked by turning MS-Vista into huge cash drain.