Little Ashimah Abu Sbieh’s life hangs by a thread or more specifically, an electricity cable that runs from a noisy diesel-powered generator in the family’s backyard. Should the generator’s engine fail, she could die within minutes.
Ashimah suffers from a rare genetic condition that means her brain fails to tell her lungs to work. Without the assistance of an electric inhalator, she would simply stop breathing.
That nearly happened late last year when the generator broke down during the night. Her parents, Siham and Faris, woke to find the 11-month-old’s face blue from a lack of oxygen. They reconnected the inhalator to a set of car batteries and then battled to fix the generator before the two hours of stored power ran out.
The desperate plight of Ashimah’s parents is shared by thousands of other Bedouin families caring for chronically sick relatives who live in communities to which Israel refuses to supply electricity, said Wasim Abas of Physicians for Human Rights in Israel.
The organization’s latest report, titled "Sentenced to Darkness," calls the state’s denial of essential services, including running water and electricity, to 83,000 Bedouin in the southern Negev desert, "bureaucratic evil".
Mr Abas said the lives of Bedouin patients who need a reliable supply of electricity to refrigerate medicines and special foods, run air-conditioning or power nebulizers and inhalators are being put in grave danger by official intransigence.
According to the report, 45 Bedouin villages have been denied services as a way to pressure them to renounce their title to ancestral lands and their traditional pastoral way of life. Instead, it is hoped they will move into a handful of deprived and land-starved Bedouin townships specially built by the state.
Concrete homes in the so-called unrecognized villages are under permanent threat of demolition, forcing many residents to live in tin huts and tents, and the national utility companies are barred from connecting them to services.
The Bedouin languish at the bottom of the country’s social and economic indices, with 70 per cent of children living in poverty. Israel has also located a chemical waste dump and a massive electricity generating station close to several of the Negev’s unrecognized villages, though it refuses to connect them to the grid.
Mr Abas said the lack of an electricity supply in particular posed a severe threat to the Bedouin community’s health. A fifth of all residents of unrecognized villages suffer from chronic illness, particularly asthma and diabetes, and require a reliable electrical supply to their homes for their treatment. Most must travel long distances, usually over dirt tracks, to reach health clinics and hospitals.
"We found that a lack of electricity contributed to a deterioration in the condition of these patients in about 70 per cent of cases, and directly resulted in death in two per cent of cases," Mr Abas said.
Hopes that Israel would be forced to connect the villages to the national grid were dashed in 2005 when the courts ruled against the family of a three-year-old cancer victim, Enas al Atrash, who was demanding electricity for the family home. Doctors had warned that Enas might die without reliable refrigeration of her medicines and an air-conditioned environment.
Instead, the judges criticized the family for living in an unrecognized village, though they recommended that officials contribute to the family’s large fuel bill so they could continue running a generator.
The Physicians for Human Rights report notes that the enforcement of planning laws in the case of Bedouin villages, most of which pre-date Israel’s creation in 1948, contrasts strongly with the treatment of the many Jewish communities that have been established illegally under Israeli law.
Dozens of individual ranches in the Negev and at least 100 of what are called settlement "outposts" in the West Bank have been set up without permits from the Israeli authorities but nonetheless have been connected to services by the national utility firms.
Yeela Livnat Raanan, a lecturer in research methods at Sapir College in the Negev town of Sderot who works with a Bedouin lobby group, the Regional Council for the Unrecognized Villages, called the situation of Bedouin families "intolerable".
She said a joint health survey conducted by the council with Physicians for Human Rights last year showed high levels of chronic illness among Bedouin children in the unrecognized villages, with 13 per cent suffering from severe asthma.
"There are numerous reasons for the high incidence of respiratory problems," Dr Raanan said. "There is no trash collection, so garbage has to be burnt. The tin huts many Bedouin are forced to live in offer little protection from the extreme temperature range in the desert. The huts are heated with coal but cannot easily be ventilated, and the electricity generators themselves are polluting."
Given the traditional large size of Bedouin families, she said, the problems associated with caring for a chronically sick relative afflicted many, if not most, of the Bedouin.
"The suffering of the Bedouin just does not register for most Jews in Israel," Dr Ranaan said. "They prefer to trust government officials who tell them that the Bedouin are primitive, stupid and hostile, and that they are trying to take over state land. We have to challenge this racism."
Ashimah’s family live in the 750-strong community of El Bat, which was finally recognized a year ago as part of a plan to develop more townships for the rapidly growing Bedouin population. Nonetheless, the residents’ chances of being connected to the electricity grid are still far off.
The state is presenting endless delays in approving the planning maps we need," said Ibrahim Abu Sbieh, Ashimah’s grandfather and the village leader.
"There are no plans to build schools, clinics or roads. We expect things to change very slowly."
He said the family finally dared to replace their tin hut with a concrete home seven years ago, when notified that recognition was imminent. But they have still been served with a demolition notice and are paying off a series of fines to avert destruction of their house.
Ashimah’s mother, Siham, said she lived with the constant fear of the generator failing and being unable to get her baby daughter to the nearest hospital, 35 km away in Beersheva, in time.
"Israel cuts off the electricity to Gaza and the world is outraged," Mr Abu Sbieh said. "But we’ve been living like this for decades and no one cares."
A version of this article originally appeared in The National, published in Abu Dhabi.