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"In Pakistan, She Would Be Dead"

The needs of a little girl with cerebral palsy run up against Ashcroft's stringent new antiterrorism measures.


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In the living room of his Rogers Park apartment, Syed Mujahid Jilani unbuckles the safety belt from his eight-year-old daughter's waist and loosens the Velcro straps that hold her legs in place. Gathering her in his arms, he supports her head and neck with his upper arm as he lifts her out of the wheelchair, cradling her limp body like a newborn baby. He lays his child gently on a pillow and turns to kneel beside his wife, Abida.

Tooba is a quadriplegic and suffers from cerebral palsy. Her parents regularly move her from wheelchair to futon to couch so that her body doesn't stay in one position too long. They've installed multicolored lights around the apartment for her enjoyment and stimulation. They massage her contracted limbs, wipe her nose and mouth when she coughs, and check her diapers every two hours. "She's never had a rash," Abida says in Urdu.* She speaks more English than her husband, but neither is fluent.

Tooba loves her morning showers and responds happily to music. And although she cannot speak, "she likes to be around people," says her mother. "She cries when she's alone."

Jilani (his given name) brought his family to the U.S. from Pakistan in June 1999, seeking medical care for Tooba. Their visa expired on December 26, 2000. Now he faces deportation under the heightened security measures enacted in the wake of 9/11. In August, Attorney General John Ashcroft ordered INS to implement the National Security Exit-Entry Registration System in order to keep closer track of the millions of aliens residing in the U.S. The first phase of NSEERS requires all temporary visa holders who are male, over 16, and from countries where the State Department says terrorist cells are active to report for fingerprinting, photographs, and interviews. Jilani is petrified. He will do anything to avoid being sent back.

"In Pakistan she would be dead," he says grimly.

Tooba was born on July 24, 1994-- "normal, a healthy child," says Abida proudly. "Nine pounds," she adds.

Tooba's parents can't pinpoint what caused her disabilities, but the problems began when she came down with a fever and stomachache at six weeks old. Abida worried that it was serious but says doctors at the Karachi hospital where she took Tooba weren't overly concerned. It wasn't until Tooba was six months old that a doctor told Abida the first fever had been meningitis. Tooba, he said, had irreversible brain damage.

Two months after that diagnosis, Tooba began physical therapy. Three times a week for nearly four years, Abida climbed into a moto-rickshaw with Tooba on her lap for the dusty, bumpy eight-mile ride into downtown Karachi. Jilani is visibly uncomfortable as he recalls his wife making those trips.

"It was too open," he says--not just to the elements, but to the leering stares of male passersby. "Not a good way to travel in Pakistan." He was too busy working to provide an escort, however, and could rarely afford to send them by car.

"I had a good job," Jilani says. "I was the supervisor for three fast-food stores in Karachi--KFC, Pizza Hut, McDonald's. It was good money for Pakistan." He made $150 a month, a solid middle-class wage. Still, he says, just one doctor's visit and a bottle of pills were enough to wipe out an entire month's earnings. He got into construction and interior-design contracting to make more money. But compared to what the doctors were charging, it never seemed to be enough.

Meanwhile, Tooba wasn't making any progress. She couldn't sit up by herself, her mental development was retarded, and her skeletal structure became more deformed as she grew. The Mujahids had no access to neurologists or other pediatric specialists.

Even more heartbreaking was the stigma attached to their daughter's disability. "In Pakistan, nobody touch Tooba," Abida says. Even health-care workers would recoil at her condition. "She is a special child," Abida says. "There is no life for a special, Tooba-type child in Pakistan."

By the time Tooba reached her fourth birthday, the situation had become intolerable. Jilani spent all his free time scouring the Internet, searching for any place or anyone who might be able to treat her. He sent out countless E-mails, appealing to medical professionals in Britain, Germany, Canada, and the U.S.

A doctor in Texas finally responded, instructing Jilani to send a videotape of Tooba, but after watching it he said he couldn't do anything for her. Then Jilani heard from a pediatric neurologist at the Weill Cornell Center in New York. After sending some of Tooba's medical records and a videotape to New York, Jilani heard back from the doctor, who said he might be willing to help.

Two months later, Jilani began to worry about how much all this was costing him: the international shipping, the long-distance charges. He was anxious to see some results. Then the New York doctor wrote back with the answer to their prayers: he offered to examine Tooba. At Jilani's request, he wrote a letter that made it possible for them to enter the U.S. for medical treatment. Jilani flew to Islamabad to get the visa, and family and friends pitched in for plane tickets and expenses. On June 26, 1999, the entire family--Jilani, Abida, Tooba, and her new baby sister, Alina--arrived in New York on a six-month temporary visa. They showed up at the medical center for Tooba's appointment on June 29.

The neurologist says now that a radiology report he'd received from one of the Pakistani hospitals suggested Tooba's condition might be treatable. The doctors there had reported "signs of abnormal progressive decay of the white matter" in Tooba's brain, he says. "That indicated to me that it could have been a rare degenerative disease rather than a static condition."

But after he had a chance to examine Tooba and look over her complete medical record, he concluded that the brain damage was not getting worse.Tooba could benefit from physical and aural therapy, but from a neurological point of view there was no treatment he could offer.

Jilani, of course, was upset. He felt that the doctor hadn't spent enough time with Tooba. And he was flabbergasted when the receptionist presented him with a $450 bill. He was expected to pay immediately. "This was not right!" he says. "I came 24 hours on a plane from Pakistan, sent videos and blood tests for this? That's all?"

Two weeks after the letdown at Cornell, the Mujahids still hadn't found a hospital that would admit Tooba, and Jilani realized the money they had wouldn't last long in New York. In fact, he'd been through this drill before. In December 1990 he'd come to New York in search of work after entering the country illegally through Canada. By May 1991, after working a series of odd jobs, Jilani had migrated south to Miami, where his illegal status was less of a problem. He'd been able to find a steady job at a Dunkin' Donuts, staying on until November 1992, when he moved back to Pakistan to marry Abida, never guessing he'd one day return.

After hearing Jilani's story, a friend in Miami offered his hospitality, and the family moved on to Florida. In the following months the Mujahids visited four Miami hospitals, where initial exams, they say, were followed up only with estimates for treatment--estimates soaring into many thousands of dollars. So in October 1999 they relocated to Chicago. Jilani had heard Chicago had a low cost of living, excellent public transportation, and many hospitals. At least here, he thought, they would find a Pakistani community--a population numbering in the tens of thousands--and the language barrier wouldn't be as much of a problem. The family moved in with a Pakistani friend who had a small two-bedroom apartment near Devon and Francisco. Jilani found spot-labor jobs around the neighborhood.

Abida calls the next nine months "the time of too much trouble." Tooba's condition steadily worsened. Chronic respiratory infections and fever kept her weak, skinny, and irritable. Twice she had to be checked into Children's Memorial Hospital after suffering from seizures. The first bill, for $1,200, was paid by a friend. The next one, in the amount of $2,400, "we are still paying for, $50 each month," says Jilani. But in the meantime he had at least found a steady job, at a clothing store on Devon.

By the summer of 2000, Abida couldn't take living in such cramped quarters any longer. Their friend kept two dogs in the shared apartment, which was driving her crazy: Tooba needed a sanitary environment, and little Alina was scared of the animals. Now that Jilani had found regular work, she tried to find them a place of their own.

One day while apartment hunting, Abida came across a bit of good fortune: she met Abha Pandya, who owns an apartment building on Rockwell near Devon. Pandya also happens to be the executive director of Asian Human Services, a nonprofit group that tries to help the immigrant community find medical care. Abida didn't rent from Pandya--she ended up finding another place--but Pandya sent a caseworker, Khalid Sabzwari, to her home. It was Sabzwari who eventually introduced the Mujahids to the Chicago Shriners Hospital.

Shriners treats children only, its services are free, and cerebral palsy is one of its specialties. To be admitted, says Shriners care coordinator Laurie McDonough, "a child only needs to have a condition that we treat; we don't look at income." The hospital is funded through the efforts of the Ancient Arabic Order of the Nobles of the Mystic Shrine for North America, a Masonic group with almost 600,000 members. The Shriners operate 22 charitable pediatric hospitals in North America. Some specialize in treating severe burns; the hospital in Chicago specializes in orthopedic surgery, neurological disorders, and spinal cord injuries. After six years of searching, Jilani and Abida had finally found treatment for their daughter.

McDonough, who was there for Tooba's very first appointment on January 2, 2001, says "she probably wouldn't have made it much longer" if Sabzwari hadn't brought her in when he did. Virtually overnight, Tooba became the subject of intense scrutiny by neurologists, orthopedic surgeons, and other specialists. She was diagnosed with quadriplegia, cerebral palsy, and a dislocated hip. Doctors also identified seizure disorder and dysphagia (an inability to swallow).

Treatment began immediately on Tooba's dysphagia. Because she cannot control the muscles in her throat, eating was a hazardous activity: bits of food going down her windpipe and into her lungs were causing infections, pneumonia, and choking episodes. The constant irritation wasn't only making it difficult to breathe; it was destroying Tooba's lungs. Doctors at Shriners told her parents that she was never again to eat through her mouth. Abida was shown how to snake a tube through Tooba's nose so she could inject an easily digestible formula directly into her stomach. Later that year surgeons installed a gastrostomy tube, allowing Tooba to ingest the formula through an IV port in her abdomen.

"No more fits after that," Abida says happily.

"She's not very communicative, but she's more alert, and obviously responding more to her environment," says Dr. Larry Vogel, a pediatrician at Shriners. "You can see she's more content, and she's got a nice smile."

The change in feeding regimen was crucial before the repeated operations they had planned for Tooba: "Nutrition is so key to recovery," says Vogel. In December 2001 orthopedic surgeons reconstructed Tooba's hips. Prior to the surgery her legs angled inward, pressing her knees tightly together.

"I love America," Jilani says. "My kid is getting nice treatment here....Her condition is improving so fast. Everyone is so dedicated." He says Tooba's physical therapist gave them her home phone number in case they had any questions or emergencies--something that never happened in Pakistan. And as Tooba has outgrown her wheelchair, Shriners has replaced it twice.

Through the hospital the Mujahids were able to enroll Tooba at Hansen Park Elementary, a Chicago public school that handles a large number of children with disabilities.

"She has a very social life, she has friends," says Abida. "They even bring a dog to play and lift her spirit." A bus with handicapped access comes for Tooba every weekday morning. Her teachers change her diapers three times a day and give her a midday feeding through the G-tube. Last summer they went to a local swimming pool, where they dipped Tooba's feet in the cool water.

Tooba's third surgery at Shriners is scheduled for March 4, when the hardware fastened to her hipbones will be removed, her left knee repaired, and her hamstrings lengthened in an attempt to further straighten her legs. And now that Alina is going to school--"pre-K," she announces bashfully--Abida's quality of life has improved as well. She's able to devote some much needed attention to Alina, who has had to struggle with her parents' preoccupation with her disabled sister, and she gets a few hours' break on weekdays from the care that has been all-consuming for the past eight years.

The Mujahid family may have found Shriners Hospital in time to save Tooba, but for immigration purposes it was too late. Seven days before Tooba began receiving care from Shriners, their visa expired. The INS had already granted Jilani two six-month extensions. He says a request for a third extension, made late in the year 2000, was rejected because he couldn't produce documents to prove Tooba had been admitted to a medical facility or that her condition was improving.

"The INS officer say, 'Give me a reason why you extend again and again.' I say I was looking for a hospital but didn't have one--and I have no proof," says Jilani. "I never tried to hide....I am an honest man."

Last year, when the INS announced a deadline of February 21 (since extended to March 21) for male visa holders from Saudi Arabia and Pakistan to report for registration under NSEERS, Jilani figured his family's luck had run out.

The announcement came on December 18, at a time when Devon Avenue was abuzz with the news that hundreds of Iranians had been arrested when they showed up to register in Los Angeles. Rumors of an impending INS roundup spread like wildfire. Jilani began to fear that he might be snatched out of his home any day and deported. His Pakistani neighbors--at the grocery market, in the mosque, in his apartment building--talked of fleeing to Canada. Jilani knew there was a Shriners Hospital in Montreal. He hated to leave, but he began to worry that if he was caught the INS would ship his whole family back to Pakistan.

"My daughter's future," he says, "was very bad."

"It doesn't work that way," says Bill Strassberger, an INS spokesperson in Washington, D.C. "We don't just pick up people and put them on airplanes. Anyone who is present with their status run out would face a hearing before a judge. Full due-process rights are available, including the right to appeal."

But on the morning of January 9, four days before registration interviews for Saudis and Pakistanis were set to begin, Jilani discovered that his next-door neighbor had fled. In the apartment across the hall, all the furniture--and even half-eaten plates of food--had been left behind. Later that day Jilani heard that the neighbor and his family had successfully crossed the Canadian border near Detroit. It was the push he needed to make up his mind.

Over the next 48 hours Jilani and Abida sold all their furniture and sublet their apartment. On January 11 they called for a cab. Jilani struck a deal with the driver to take his family to Detroit for $450. At 11 AM, not knowing where they would spend the night, he and Abida packed the taxi with as many belongings as they could fit. At 6:30 PM the cab dropped the Mujahids next to their pile of luggage on a Detroit street corner. Jilani hailed another cab to take them the last few miles, across the Ambassador Bridge and into Windsor, Ontario. Twenty minutes later they reached the Canadian border post. That's when his plan began to unravel.

"The Canadian agent didn't let us unload [our stuff], and told everyone to get out of the car," says Jilani. He told the border guards that he'd come to claim refugee status. The guards told them to come into the immigration center. Jilani, Abida, Tooba, and Alina followed the border agents into the building while the taxi waited. They were led down a narrow hallway into an office, where they presented their identification and were left alone. Shortly, two officials returned and told Jilani and his family to step back into the hall.

"They told us there is no one here who can interview us for refugee [status]," Jilani says. He suspected they were not telling him the truth. Thinking this was the time to make his stand, Jilani stubbornly planted his feet, refusing to move.

"I am a refugee!" he declared. The Canadian officers were not impressed. "If you won't leave, we will call the police to remove you," they warned. A frightened Abida tried to convince him to cooperate. A few tense moments passed before Jilani decided to follow his wife's advice. The family was given a February 11 appointment to return to the Windsor border post for a refugee interview, then escorted out of the building.

As they pulled away in the cab, Abida and Jilani realized they were not going back the way they came. They exchanged worried glances. Why weren't they headed back over the bridge?

On the way into Canada, you can cross the river without passing through a U.S. immigration checkpoint. But if you're heading to Detroit from the Canadian side, you must go under the river, through the mile-long Detroit-Windsor Tunnel. As the Mujahids' cab neared the end of the tunnel, Jilani could see the checkpoint ahead. His plan had failed. After 300 miles and ten hours on the road, Jilani was being delivered straight into the hands of the INS.

The cabbie, tired of his troublesome fare, let Jilani unload the family's baggage by himself as Abida and the girls headed for the office. When he caught up, he and Abida were fingerprinted, photographed, and asked a series of routine questions: When did you first enter the U.S.? On what flight? Where in Pakistan are you from? Where do your parents live, what is their address in Pakistan? What is your address in the U.S.? Your phone number, your cell phone number? The first round of questioning lasted almost three hours.

They sat back down in the open waiting area, wistfully watching Canadians and Americans cross the border with ease. Midnight came, and with it a shift change: a new INS officer stepped up to the computer terminal. "He says, 'Now I am the one in charge,'" Jilani recalls. "'You have to answer the questions for me now.'" And so they started all over again.

In hindsight, Jilani says, it wasn't so bad. "The agents were very nice, not using any bad words." But it lasted all night. Abida pleaded with the agent for legal status. "I thought we were going to be arrested, so I said, 'We want treatment, don't arrest or deport us,'" she says. Jilani struggled to stay awake in his chair.

By six o'clock the next morning, they were free to go--after Jilani signed a voluntary departure notice that required his family to leave the U.S. by February 11, the date of his scheduled refugee interview in Canada. The family got into another cab, this time to the Detroit Greyhound terminal. On the six-hour trip back to Chicago, Jilani and Abida were deflated. With Tooba laid out across their laps, they gazed out the window, shell-shocked. For the first time in their three-and-a-half-year American odyssey, Abida said, she lost hope. "Our life in the U.S. is over now, for sure."

According to the INS's Strassberger, "a voluntary departure notice is not a deportation order. But [Jilani] probably waived some of his rights when he signed off on it. If he opts not to leave and tries to remain anonymous, that might work for a while--but then his name might come up for enforcement action, and he could be picked up."

Abida didn't understand what all the paperwork really meant, only that they were expected to leave the country. So she embarked on a letter-writing campaign, pleading for help from government officials including George W. Bush, Dick Cheney, Colin Powell, John Ashcroft, Dick Durbin, and Rod Blagojevich.

She didn't get any government action in response to her letters, but her campaign caught the attention of community activists, who in turn convinced Taher Kameli, an Iranian immigration lawyer, to take the case pro bono. Abida and Jilani met with Kameli on the evening of February 4.

"I will file for humanitarian parole and ask the INS to suspend deportation," Kameli told the worried couple in their apartment. He planted a kiss on Tooba's cheek, then hustled off to his next after-hours appointment.

After he left, Jilani went straight to Tooba, who was resting comfortably on the futon. He bundled her up in his arms and settled back into his cross-legged perch on the floor. He cooed and cuddled and kissed her. Tooba appeared more at ease, and Jilani too--his face relaxed, soothed by her presence in his lap. "Her brain is not 100 percent, but she knows mother, me, her sister," he said tenderly. Tooba gurgled contentedly and made eye contact with her doting father. "This is my body parts," he said.

On Wednesday morning, February 19, Jilani showed up at the Kluczynski Federal Building for his NSEERS interview. He hadn't kept his appointment with the Canadian immigration center, and he and Abida had canceled their sublet. Accompanied by Kameli, Jilani was whisked up to the 24th floor for preliminary questioning, which lasted from 8:30 to 10. Then he was taken across the street to INS offices at 10 W. Jackson, where the feds checked out his information: his address, his work history, his date of entry. Jilani was finally released on his own recognizance at four that afternoon, with an NTA--"notice to appear"--before a federal immigration judge. The INS decided not to pursue deportation proceedings against the female members of the family.

According to Kameli, the INS has a wide range of prosecutorial discretion. "The way the laws are written is weird," he says, imbuing various offices with a sort of de facto veto power. "For example, the prosecutor can decide whether or not he wants to pursue the case. And once a person gets deported, INS officials have the right to suspend the deportation order indefinitely."

"I feel more confident about my status now that I've registered, but I still feel like the sword is hanging above my head," says Jilani. "I will try my best to convince the judge that I should not be separated from my family."

Though a court date hasn't been set, Jilani plans to bring Abida and the girls before the judge, "to show what Tooba looks like and what she is going through." The INS will allow Tooba to stay for her March 4 surgery. Doctors are planning another surgery to straighten her spine sometime in the coming year or two. But what will happen to Tooba if her father is deported?

"I cannot even think about the judge being so cruel," says Jilani. "I have not even made up my mind how I will react if that happens."

* Translation when needed was provided by radio commentator Dr. Mujahid Ghazi and community activist Sadruddin Noorani.

Art accompanying story in printed newspaper (not available in this archive): photos/Paul L. Merideth.


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