The AI-Sayed Tribe in the Northern Negev has approximately 3,000 members, and over 150 people who are congenitally deaf, a rate fifty times the world average. A few children are able to attend a special Bedouin school in Be’er Sheva, but most stay in the village and develop home signs to communicate with their family and villagers.

Salman al-Sayed is the father of three Deaf children; two daughters aged 18 and 20, and a 10-year-old son. “I had fears before the wedding,” he says. “We knew that there’s a problem in our tribe, and that there was a chance that we would have deaf children, but the truth is that 20 years ago there was little awareness. I didn’t take the possibility seriously, at the time everything was from God.” Salman is critical of the way the Israeli government has handled the education of Deaf children. “My son doesn’t even know sign language. Instead of setting up a special class in the village, they send them to schools that don’t have enough resources. I think if they would just save the cost of the buses every morning, they could organize a class for our children that would help them progress.”

His deaf daughter Ismain, 20, thanks God that she studied in a school outside the Bedouin diaspora. “I, as opposed to my little brother, learned how to read and write Hebrew in school,” she explains, with elaborate hand movements. “Unlike my brother,” her father translates her gestures, “I know sign language. I meet with the deaf girls in the village, and it’s easy for us to talk among ourselves. I talk to other girls in the family by writing; we sit next to one another and pass paper and a pen back and forth.”

Ten years ago, a genetic counseling project for the Bedouin community at Ben-Gurion University (BGU) of the Negev discovered the truth about the AI-Sayed tribe. In a survey it turned out that 27 percent of the marriages in the tribe are between cousins, and 65 percent of the married couples are related to some degree. “The deafness in the AI-Sayed tribe is a result of a mutation in certain gene,” explains Carmi. “We don’t have an answer as to how the mutation was created, but in a certain generation it happened, and then it began to be passed along from one generation to the next, and among the members of the tribe who married one another. We all have the same genes, but in some of them there is a change, a mutation, in a gene called connexin. Deafness can appear only when both parents are carriers of the mutation, and then there is a 25-percent chance that their child will be deaf.”

According to estimates, about one-quarter of the members carry the genetic mutation that causes deafness. Prof. Rivka Carmi, the dean of BGU’s faculty of health sciences, identified the unusual phenomenon and began to implement a counseling project. The idea was fairly simple, and together with Dr. Aviad Raz of the department of behavioral sciences and Prof. Ilana Shoham-Vardi of the department of epidemiology and health services evaluation, the team succeeded in identifying 16 genes related to deafness among the members of the AI-Sayed tribe. The findings were passed onto members of the tribe, and genetic mapping was done for all of them. By doing this, the researchers in effect enabled the tribe to break out of its cycle of deafness. The data that were gathered make it possible to check the genetic suitability of couples who are about to get married, and to determine the degree of risk of giving birth to deaf children. However, the tribe rejected the revolution offered by Prof. Carmi.

Dr. Abed al-Sayed, the main intermediary between the researchers and members of the tribe, still sighs when he recalls the apathy of his relatives. Five years ago he returned to the village from Romania, where he specialized in dentistry. Today he is the head of a successful clinic in neighboring Hura, and is studying for a master’s degree in health administration. “Many of the members of the tribe, mainly the older people, believe that there is no connection between the deafness in the tribe and genetics,” he explains. “They say it’s from God. According to one belief, every woman who looked at a deaf child while she was pregnant gave birth to a deaf child.” He offers an almost unbelievable explanation for the fact that members of the tribe aren’t fighting against the genetic defect from which they suffer. “They simply don’t see deafness as an illness,” he says. “We’ve been experiencing deafness for hundreds of years; today in the village they look upon a deaf person as an ordinary person – he simply doesn’t hear. A deaf person isn’t considered ill. Because there are so many deaf people, they aren’t exceptional any more; everyone has one or two deaf children in the family. The hardship becomes easier, nobody is alone. In every third house there is someone deaf. There are deaf elderly people, there are deaf parents and there are deaf children.”

Perhaps the greatest problem of the AI-Sayed tribe is their social isolation, which was forced upon them. According to oral histories, the head of the tribe came from Egypt with his wife 150 years ago. The family settled among the Bedouin tribes in the Be’er Sheva region, and subsisted on agriculture and raising animals. When their children grew up, they encountered an unexpected problem:

The other Bedouin tribes, who had formed excellent commercial and social ties with them, refused to marry off their daughters to members of the AI-Sayed tribe, “the foreign fellahin” (peasant farmers). Only through tremendous efforts did the head of the AI-Sayed tribe succeed in marrying off his sons to women from the area and from Gaza, but their social status remained very low, because they aren’t considered “original” Bedouin. The second generation, therefore, began to marry cousins.

The attempts to forge ties of marriage with other tribes failed repeatedly, and for lack of choice, the AI-Sayeds continued to marry among themselves, for five generations. Since there were more women than men, and according to Bedouin tradition a woman cannot remain single, many men were required to marry more than one woman. One complication led to another, the mutations were passed on and became more widespread from generation to generation.

Salah al-Sayed, the father of two deaf daughters, blames the Bedouin tribes for the situation. “I’m angry at them,” he hisses with disdain. “They, who thought they were better than us 100 years ago, continue to do so today, and they are considered educated people, ostensibly openminded. But ethnicity is the name of the game, just as among you, Ashkenazi [Jews of European origin] parents once didn’t want their daughter to bring home a Mizrahi [Jews of North African or Middle Eastern origin] groom. It’s the same thing, but among you this phenomenon disappeared within a generation or two, and among us it has been going on for 150 years. My daughter is about to get married in another year or two, and I will definitely make sure than her husband doesn’t carry the gene; there won’t be a wedding if she is going to have a bad life.”

Another problem is that while the Bedouins speak Arabic, institutions in Israel use Hebrew. AI-Sayed explains: “Every school I went to presented impossible conditions, such as the requirement to review the material studied in class with the child at home, and four hours of study in Hebrew every day. The problem is that my wife knows very little Hebrew, I work and we have no possibility of meeting such a demand. I also thought of sending her to a boarding school in Jerusalem, but that means I would give up my child and give her to a foster family. I won’t do that. In order to reach a situation where a communications therapist can treat her, she has to understand Hebrew, and she doesn’t. In order to have a chance, the deaf children in our tribe have to study four languages at an early age: Arabic, Bedouin sign language, Hebrew and international sign language. In all my searches I didn’t find an Arab communications therapist who could help her. That’s the situation today as well. There’s nothing to do, it’s a dead end.”

Dalia Silberman, director of the southern branch of an association promoting equality of opportunity for the disabled, agrees with Salah al-Sayed. “It drives me crazy that the authorities don’t do anything, don’t take care of the children,” she says, upset. “It’s criminal negligence. There’s no public awareness of the problem, and for the authorities it’s business as usual.”

Recently, the Knesset Education and Culture Committee held a special discussion about the shortage of communications therapists in the Arab sector. It was said that of 1,562 certified communications therapists in Israel, only 34 speak Arabic, and not one of them is active in the southern region. The treatment of deaf Bedouin children, not only those of the AI-Sayed tribe, is now at a critical point. The Niv school in Be’er Sheva, which specializes in treating deaf Bedouin children, reduces its quota of students every year. In the past, 600 Bedouin students studied there; at present there are only 49.

“The school has closed its gates to additional children,” says Silberman. “The intention here is clear: to bring about closure of the school. It’s a terrible injustice; the same child who doesn’t get to the special school in Be’er Sheva will go to a school in the Bedouin diaspora. There the school is usually not adapted to absorb him, there’s no professional infrastructure to treat deafness. The deaf child won’t enter the regular class, because he can’t, and what will happen is that they’ll put him in a class with severely retarded and autistic children. In the Niv school they study only in Hebrew, and in this way they get tools that they can’t get at home or in school in the Bedouin diaspora. The Ministry of Education may have forgotten that a deaf child is a child of completely normal intelligence – in my opinion, they’re letting these youngsters deteriorate totally.”

In the Bedouin village of Hura, Sheikh Akal al-Atrash, age 49, is familiar with the problems of the AI-Sayed tribe. The AI-Atrash tribe is one of the most respected in the south. “I even gave their children religion lessons in their school in Be’er Sheva,” he says. “I had an interpreter who translated what I said into sign language. They sent me a very moving thank-you letter.”

“One of my great grandfathers was hard of hearing,” he says. “At the time it was apparently a very strange phenomenon – after all, we’re talking about the leader of a Bedouin tribe who couldn’t hear, who was deaf. For the Bedouin, hearing is of utmost importance: His life, especially then, required that he hear, that was his strength. Because of that same unique problem of his, we were nicknamed ‘atrash,’ which means deaf.”‘ The ghost of the old man is returning to the tribe. During the past 10 years, 15 deaf children were born among its members. “We are aware of the problem,” says AI-Atrash. “What happened to the AI-Sayed tribe won’t happen to us; we’re making sure to mix with other tribes through marriage. The choice is in our hands. I don’t understand the AISayed tribe at all – in my opinion, they’re at fault for their situation. I blame them. They should have set things straight: What do they want, a village of deaf people?”

He is silent for a moment. “There are many psychological and tribal barriers,” he says later. “For example, from my tribe nobody has married members of the AI-Sayed tribe. Even today, every tribe regards the other as foreign, but I believe that will change in the future. And in spite of everything, the fact that they have so many deaf people only proves that they haven’t done enough. They brought this complication on themselves. They had other options.”

Nuri al-Ukbi, chair of the Association for the Support and Defense of Bedouin Rights in Israel, is familiar with the subterranean currents among the Bedouin tribes in the south. More than once he has had to stand between two tribes; it’s not always pleasant, but the job requires it. He agrees with Sheikh al-Atrash. “The people of the AI-Sayed tribe are to blame for everything,” he says without reservation. “They themselves are not willing to marry off their daughters to other tribes. They say something like this: If they don’t give our men women from certain tribes, those tribes won’t get our women. They’re the ones who have to change the situation – they have the problem, they have the plague. Why should the men in the AI-Sayed tribe marry three or four women? I’m sure that the moment they begin to give their women in marriage, the other tribes will return the favor. I say to the AI-Sayed tribe, it depends on you – if you don’t decide to fight the problem, you’ll continue to fill buses with deaf children who will travel to special schools.”