Circa 2007
When Chet Cooper, from this fine magazine, called me up one Saturday and asked me if I wanted to go to a international disability conference in Doha, Qatar, I immediately said, “Sure, of course, wouldn’t miss it for the world,” not knowing where Doha, Qatar was located, how to pronounce the word, “Qatar,” or even why I should be invited to such an august gathering a half a world away. I’m not a leading world disability advocate or activist; I don’t run a prestigious organization like “Autism Speaks” or the British charity, SCOPE. I’m just, you know, disabled, a wheelchair user for ten years who writes TV shows and pop-culture books and recently wrote a book about life after paralysis. Even after a decade, I still feel like a babe in the disability woods. I’m still making embarrassing verbal gaffes like saying “disabled person” instead of “person with a disability” or “wheelchair person” instead of “wheelchair user.” I’ve even been known to use the word “handicapped” on occasion, raising the hackles of every right-minded disability cognoscente in earshot. I’m new here, I tell them; I’m still getting use to just being disabled and not yet engaged in the Augean task of politicking and organizing for disability rights.
But the theme of the Qatar conference this year—formally called “The Second Annual International Forum on Children with Special Needs”—was, to quote the brochure, “to highlight media as a positive change agent in the transformation of disability.” Because I hope my book is a “positive change agent” in the way people view the disabled, I saw that I might have a place at the table, so to speak. And I was, and am, dying to travel, to seeing the world from 54 inches off the ground. Plus, Chet had another great media idea. Since I had spend a good part of my career making and writing documentaries, why not make one about this event, not to mention the exotic Middle Eastern country we were about to experience first-hand? And so our little party of four—Chet, cinematographer and old friend, Paul Goldsmith, field producer Columbine Goldsmith, and myself—embarked on ‘The Road to Qatar’.
Before I describe what we encountered, let me say this—this conference and this trip combined were genuinely mind-broadening, to bend an old cliché. Qatar is a fascinating place, a country in the process of inventing itself at lightening speed and a cultural juncture between East and West. The conference, a truly world-class gathering that included every one from Cherie Booth, QC, the wife of the prime minister of Great Britain, to people of modest means on the front lines of disability education from Ghana to Brunei, was in itself a visit to a strange new land, at least for me. I’ll be processing the images and information I gathered from the whole venture for years to come.
check this out
The international forum was sponsored by the Shafallah Center for Children with Special Needs, an advanced educational facility created under the patronage of Her Highness Sheika Mozah Bint Nasser Al-Missned, the First Lady of Qatar. I have nothing to compare it to, personally, but guest speaker Anthony Kennedy Shriver, related to all the other famous Kennedys and Shrivers and chairman of Best Buddies International, an outreach program for kids with intellectual disabilities, said Shafallah was without a doubt the finest facility of its kind in the world, “an enormously important symbol [for] what it represents for the whole Middle East and what it represents for the world.” My guess is that he should know. He’s probably toured every such facility out there.
What makes Shafallah so special? A member of the Shafallah staff, the Assistant Director of Training and Development, Sarah Hannibal (more about her later), briefly ran it down for me. One reason, she noted, was “the immense amount of support and backing we receive from the Emir and her highness Sheika Mozah.” It’s a social priority in Qatar to help kids with special needs. I don’t know this for a fact, but my guess is that few other regimes in the region have this at the top of their “to do” list. The Qatari government is small enough, and rich enough, to focus on a priority like this and pay for it. The layers of bureaucratic entanglement are thin.
Secondly, the teachers are well-trained, according to Sarah, many getting in excess of 30 hours of professional development training every year. The in-house staff represents over twenty-five different countries and the center is constantly bringing experts in and sending staff out to other countries to learn more. The forum itself is just one such occasion for the center to build cooperative programs with groups like “Autism Speaks” and “Best Buddies.” It seems to be setting itself up as the nexus of a world educational network, not unlike a medical research facility like the Cleveland Clinic or Memorial Sloan-Ketterling Cancer Center.
Then there is the place itself. The Shafallah Center is a visually stunning site, an expanse of low-rising white-white buildings in a compound on the edge of Doha. Like everything in Qatar, it feels like it was built yesterday. Its pristine chalk white walls are covered with art work by the children whom it serves and the endless archways and marble-floored entry rooms make you feel like you’re weekending in a royal desert retreat. Even the lecture hall is exotic, a seamless round white dome where images could be projected on every surface. This is not the pre-fab, fake-wood-siding “special ed” bungalow situated behind P.S. 14. This is a palace of learning.
But then again, it fits right in with the emerging metropolis of Doha, not like any city you’ve ever seen. Qatar is a thumb-shaped emirate situated along the coastline of the Persian Gulf and Doha is like an urban mirage rising at the edge of the desert. Think of the meteoric rise of Las Vegas in the era of Bugsy Seigel, from desert dust to the Stardust in a roll of the dice. But this isn’t a garish gambling Mecca (no Islamic pun intended); this is a new world city. Hundreds of skyscrapers are under construction, with a goodly percentage of the world’s building cranes on lease. To our eyes, it seemed like they were building two identical 50-story edifices at every site, like the contractor had talked them into a two-for-one sale. At one point Paul shot the city at dust from across a small in-land waterway. As a thousand lights from a forest of half-built towers blinked on at once, it didn’t seem real. It looked like some cinematic computer animation that Hollywood created for a city on the moon.
check this out
Currently, Qatar has no unemployment, no observable crime, no smog, no graffiti, no gangsta rappers, no public drunkenness, and no car that we could find—and we looked hard—built before 1985. And electricity is free. More than one person told us that Qatar had the highest per capita income in the world; it just passed Luxembourg or something. Seventy-five percent of its roughly 800,000 inhabitants are guest workers from places like India, Malaysia, and the Philippines—the band playing in the bar at the Sheraton Doha, one of the only places to drink in this alcohol-free country, was all Pilipino—called “Life After Dark”—and they did a mean rendition of the 70’s pop classic, “I’d Really Love to See You Tonight.” The other 200,000 denizens are native Qatarians and they are the only people allowed to be citizens to date. They run things. And they are no slouches at it.
Okay, the place is not perfect. The traffic did seem to be headed toward grid-lock status, there were very few accessible hotel rooms in the whole city, and you probably can’t walk around saying slanderous things about the powers that be and last long. But women can drive, vote, and seemed to be in positions of authority, at least around Shafallah. That certainly didn’t fit the common stereotype of a Middle Eastern society.
Dr. Ronald Brown, an American education specialist attending the forum who lives in nearby Abu Dhabi and is a longtime Arab-watcher, explained the particular appeal of the Qatari experiment. He said that among all of the Arabs he had worked with, the Qatari leadership was the most “adventurous” in their vision of a future society. Besides a forward-looking institution like the Shafallah Center, they had also created an “education city” within Doha to house satellite campuses for American universities like Texas A & M, Georgetown, and Cornell’s Weill Medical Center. They are actively pursuing cross-cultural pollination through sponsoring international events like the 15th annual Asian Games. And Qatar is also home to what could arguably be called the Voice of the Middle East, the Arab TV network, Al Jazeera. Even some high-ranking Qatari officials mumbled about what they perceived as Al Jazeera’s blend of journalism and opinion—not that any American network would ever be guilty of such sins—but no one doubts Al Jazeera’s increasing power and influence in shaping the New Middle East.
The term Dr. Brown kept using to describe the whole gulf Arab culture was “gracious.” Arabs, he said, have a long tradition of hospitality, generosity, respect for others, and personal warmth. There was not one Arab, at the conference or on the street, that didn’t come across this way. Maybe we were gullible victims of a giant con job, but I don’t think so.
Just the word “Arab” is scary to most Americans. See a guy in a traditional head cloth (called a kufiyya) and black coils (called the agal) walking around the local mall and the general thought bubble (or at least my general thought bubble) is “terrorist,” “terrorist sympathizer,” or at the very least, “freedom hater.” “Gracious,” “kind,” “thoughtful,” “generous,” and you know, “just another human being,” is not the momentary assumption. Well, for the sake of the emerging world order, think again.
The first Arab we hung out with was Rami, our driver and guide on a desert safari on our first day in town. He was born in Lebanon but had moved to Qatar at age one. He was a wild man; his nickname was “The Desert Fox.” Along with a caravan of ten other SUV’s, he drove us down the highway until it just stopped in the middle of nowhere. While the drivers deflated their tires for desert traction, the rubes rode around on the back of a camel and felt like Omar Sharif for about a minute and a half. Then, as Rami played the Backstreet Boys on cassette in his souped-up four-wheel-drive Nissan, he assaulted the endless sand dunes south of Doha like a skateboarder in an empty swimming pool. On the way out to the sands, he pointed out the single pipeline that brought natural gas from the outback of Qatar to the coastal refineries and made this specter of a world-class country possible.
The Shafallah Forum opened with a speech by UN Ambassador Luis Gallegos of Ecuador outlining an important global bench mark in the recognition of people with disabilities—the recently approved UN Convention on the Rights of Persons with Disabilities. Though I got lost in all the bureaucratic verbiage about “protocol,” “process,” and “implementation,” it was clear this was a new day for the global disability community—a paper declaration that set a world standard for the fair treatment of the disabled. The Sheika herself was present for this proclamation, the Qatar equivalent of the President throwing out the first baseball of the season. She was stunningly beautiful, completely accessible to anyone who wanted to say hello, and clearly there for more than a photo opportunity. For whatever reason—and we could never quite find that out—she had a passion for working with children with special needs.
Among all the heady talk about a worldwide campaign to improve the lives of the disabled, a number of participants with disabilities joined the gathering and brought the whole thing down to street level. After the first evening’s dinner banquet—the food at this event deserves its own gourmet chronicle—a young lady stood up and said we were about to watch a movie about a 39-pound man. No one would admit it under oath, but half the audience was no doubt itching to slip away and go check out the Pilipino version of The Shirelles in the “Drinking Hole” on the second floor. (The preferred pre-dinner cocktail in Qatar was fresh kiwi or strawberry juice.) But no one bolted for the bar. We all sat politely and watch the documentary, called 39 Pounds of Love. And we were collectively blown away.
check this out
That 39 pounds of love, daring, impudence, and unassailable courage is Ami Ankilewitz, a 34-year-old Israeli born in Texas who gets his heart broken in the first reel and then sets out to criss-cross America in search of the doctor who told his mother at his birth that he had only six months to live. Ami hauls around a body with virtually no muscle tissue, given the severe form of muscular dystrophy he was born with, but the man has a heart and will that not only convinced a van full of able-bodied buddies to come with him on his “Easy Rider” escapade, but also refused to give up even in the face of near-death. Ami can move his finger—that’s about it—
and he’s a damn good computer animator when he’s not playing out his personal psychodrama about a myopic doctor for two hours. In the end he finds the doctor, straightens him out about the brave heart beating inside every disabled body on the planet, and heads back to Israel to live his life.
Another film star, Larry Selman, was also in the house. The name of the Academy-Award-nominated doc about Larry’s life in New York, directed by neighbor Alice Elliott, is called The Collector of Bedford Street, because that is what 65-year-old Larry does—collect money for all kinds of charities, from Aids Walk to planting new trees in the neighborhood. Larry has developmental disabilities and when we saw him in Doha, was also using a wheelchair because of a recent stroke. Did that slow him down? Hardly. Sitting next to him at the opening session, Larry leaned over to tell me that he planned to give the Sheika a nice big kiss, given the chance. He would probably try to sell her a raffle ticket for “Dinners for Two” to support more Greenwich Village clean-up projects. He sold me a couple—hell, he probably sold half of Qatar a couple. Larry is a pint-size force of nature.
Ami and Larry were there throughout, taking bows and popping jokes with the rest of the participants, and seeming no more freakish or out of place than Emmanuel, the one-legged young Ghanaian who biked across his native country and ended up getting the nation’s laws changed for the disabled; or Victor Pineda, who wheeled up in his powerchair for the big gala dinner wearing a full-out Arab gown and head dress; or the dozens of abeya-clad Arab women from Yeman, Jordan, Tunisia, or Iraq sitting around the ubiquitous banquet table nibbling on fresh sushi (with no Japanese in sight) or sixteen forms of dessert; or me, a guy in a chair with an Okie accent wearing an “Oregon Coast” baseball hat.
As part of our documentary, I approached a table of black-draped Muslim women at one luncheon. This was a first for me. They looked humorless and intimidating until, of course, they opened their mouths. Every one of them shook my hand—it’s a natural, dumb-Yankee thing to do, stick out your hand even where it is frowned upon—except one young lady from Tunisia, who politely declined. We filmed each woman as she briefly told her story. One Lebanese woman, Moghitha Alkibsi, was moving from the states to Qatar to work with disabled children because she thought the need was much greater in the Middle East. Another woman, an American-edu-cated professor from Brunei, peppered me with questions about how to write a book about her work. And one woman from Iraq, as Paul remembers vividly, took care of 150 autistic children a day in her own home, along with her own autistic child. She was currently away from Iraq because her brother’s whole family had been kidnapped for ransom. The ransom had just been paid, so she was headed back after the conference. Like many people at this gathering, you could have done an entire film on her story alone.
You get the idea. Under the broad banner of disability awareness, the conference was a coming together of people you would have never met otherwise, all of whose “differences”—physical, cultural, religious, sartorial— just faded in the light of a common cause and a completely hospitable environment. Tolerance is often just a matter of open-minded exposure—I never knew a quadriplegic could be sarcastic until I met a sarcastic quadriplegic. Or, I never knew that severe-looking Arab women with no makeup were so approachable until I approached one. Direct human contact—what a concept!
Meanwhile, the formal presentations continued, both ceremonial and substantive. The First Lady of Great Britain—Cherie Booth, QC, wife of Prime Minister, Tony Blair, and co-chair of the forum—was a star attraction, along with a whole contingency of First Ladies from Albania, Rwanda, Bulgaria, Panama, and the European Union. Speaking for her own population, Mrs. Blair outlined the rise of childhood disabilities in even the most advanced Western societies. “The latest figures available in the UK,” she said, “show that in 2003, there were 770,000 disabled children under the age of 16, one in 20 of the total child population of the country.” And the increase is precipitous—62 percent in the last thirty years. You hear stats like that and “children with special needs” ceases to sound like a minor social phenomenon. It sounds like a health and educational issue of the first order.
check this out
The most startling news about disabilities came from Suzanne Wright, founder of the American organization, Autism Speaks, and the grandmother of an autistic child. Calling autism an “urgent global health crisis” affecting tens of millions of people worldwide, she said that in the US alone, autism now affects one in every 150 American children and an astounding one in every 94 American boys. From 1992 through 2003, the rate of increase among autistic children was 800 percent. Every twenty minutes nowadays, a child with autism is diagnosed in the US. And the divorce rate among their parents is 70 percent.
What is going on here? You don’t hear the NBC evening news—even though Mrs. Wright’s husband, Robert Wright, used to be the president of NBC—talk about the national epidemic in autism sweeping the land. For all of the “ripped from the headlines” dramas on American TV, I can’t remember one in recent memory focused on autism. (People with disabilities as a whole are a rarity on American film and TV, period, but that’s a whole other rant.) If you are over fifty, and you know who you are, you remember the polio epidemic of the 1950s that was a ubiquitous daily news item and an ongoing national conversation, much like Iraq or the death of Anna Nicole Smith is today. At the time, polio hit about one in every 3,000 Americans. The rate of autism, to repeat, is one in every 150 American kids. And there’s no Dr. Salk with the magic vaccine. At this point, they don’t even know what causes autism.
Mr. Shriver, announcing himself in jest as Maria’s brother, spoke movingly about how he came to dedicate his life to working with those with intellectual disabilities after his personal experience with his Aunt Rosemary Kennedy, John and Robert Kennedy’s disabled sister. And like everyone who stood at a podium, he praised Her Highness Sheikha Mozah for her “professionalism, her fortitude, her dedication and her perseverance” in creating the Shafallah Center. No one at this forum was about to argue with him.
Okay, we didn’t hit every workshop and meet-and-greet on the schedule. We had to fool around a little, Doha-style. Late one afternoon—the city shuts down from 1 to 4 because of the usual heat factor, though it never felt any hotter to us than Santa Monica in July—we took off for what appeared to be the oldest, funkiest Arab market in Doha—called a souq—though we found out later that it was only built a year or two before. Even the old stuff is new in Qatar. This indoor mall of sorts was a cavernous weave of dark hallways with hundreds of little shops selling all kind of dry goods and spices and men laying around on long benches smoking hookahs as the sun set over the Gulf. They weren’t sitting, mind you, they were lounging horizontally in their long white robes, serenely puffing away and no doubt chatting about their price of gasoline (currently about 35 cents a gallon, we were told).
Our mission at the souq was to purchase a traditional Arab shirt for the well-dressed wheelchair user. Since few of the merchants spoke English, I kept pointing to my polo shirt and saying “Shirt, Shirt.” They directed me to a place where an avid fellow tried to sell me a “Rolling Stones World Tour” T-shirt. We finally found the right fabric merchant and the right floor length shirt/gown. After another round of hand signals, the merchant just cut it off at the waist and stitched it up right in front of us. I ended up with the head scarf, black coils, skull cap, white pants, the whole Arab street style, and I still looked like a yokel on holiday. But it was very cool and comfortable.
Driving back in a cab, Paul spotted a sign reading “Bed & Bath” and quipped that the full name was “Bed, Bath, & Burkha.” The marketplace was filled with many mysterious Burkha-clad women—okay, maybe they were “abaya”-clad women—but certainly not all. There are burkhas, or burqas, abayas, chandors, hejabs, and niqabs—it all gets very complicated. In Qatar, it appears that both women and men can wear whatever they want, as long as it’s modest and respectful of others. No short-shorts, bras as outer garments, or wife-beater T-shirts, please. Even with this caveat, the standards are loose and liberal compared to a place like Iran, where fashion police hand out warning tickets if a woman is wearing her head scarf too loosely.
Another side trip, arranged by Columbine, took us on a tour of Al Jazeera headquarters, something we had hoped for from the moment we hit town. If this cable network, widely defamed by the likes of Donald Rumsfeld and other Iraq war engineers, was in fact the house organ of Osama Bin Laden, then it’s filled with the slickest, most ingratiating conmen on earth. From our “naïve” Western view, the whole operation seemed open and un-paranoid—can you imagine walking into the Fox News headquarters and being allowed to shoot video freely? The staff seemed like a bunch of earnest, hard-working young people who thought journalism was important. Hallways were peppered with idealistic aphorisms by the likes of Nelson Mandela and the always-quotable Bob Dylan. The place was, to say the least, American-friendly.
Our soft-spoken Al Jazeera guide, Abdullah, led us right into the vast newsroom a glass panel away from the ongoing live news broadcast and we walked up to whomever and just started talking. One producer had come in on his day off to run down a rumor about the death of Hosni Mubarak, the President of Egypt. A young woman reporter, her neck in a brace because of a recent horse accident, couldn’t wait to get back to the war fronts of Somalia or Palestine. She had no ideological ax to grind, at least in the 20 minutes we spent with her. She was just passionate about her job—risking her life to deliver the news. She did wonder why at least the English version of Al Jazeera wasn’t available in the US. We didn’t have an answer.
After three days of workshops, speakers and even a “media blitz” where various media representatives manned little booths to promote their film, publication, or foundation, the conference wrapped up with… you guessed it… another sumptuous meal. During one of the last gatherings, we ran into a young Muslim woman I mentioned earlier—Sarah Hannibal—who became, at least for me, the person who made the most lasting and profound impression. She talked like an American, dressed like a Muslim, and devoted her working life to the education of children with special needs. She was the whole package.
Sarah was born, raised, and schooled in the great state of Texas. Having been a special-education teacher in the states, she answered an ad for an autism specialist in an education magazine and upon hearing the country she was being invited to, had to ask her friend the geography teacher to locate it on a globe. She knew no one in the Middle East when she boarded the plane to come to Qatar. She met another American woman coming to Shafallah at Heathrow Airport in London. That woman stayed for a year, then returned to the US. Sarah never left.
Within six months she decided to convert to Islam and soon after, married a Qatari man and started a family. When we met Sarah at Shafallah, she was in a traditional black gown/abaya and head scarf/hejab. Only her face was exposed. It was a bright, inviting face. Paul thought she had the warmth and spark of Sally Field in The Flying Nun. She was very traditional in her social interactions—she wouldn’t shake my hand, which I found to be very non-Texan, but I got over it quickly.
Sarah was a one-person extension course in “Why Do Muslims Act Like They Do?” Why, for instance, wouldn’t she shake my hand? Because in the Muslim tradition, it is good to avoid unnecessary physical contact between men and women who aren’t married. It is a sign of respect to the family. It is not meant to be off-putting, unfriendly, or a matter of hygiene. It is easy enough to convey friendliness and openness with your eyes without physical contact, and it certainly avoids the often uncomfortable and inappropriate intimacy women have to put up with from brutes in the West (my extrapolation, not Sarah’s).
Fair enough. No unnecessary physical contact. But why wear monotone, loose-fitting clothing that pretty much cloaks the idea that you are even a woman? Again, Sarah had a simple, straight-forward explanation. First, it avoids the issue of class, much like uniforms at an urban high school. Secondly, when you are not observing a woman’s clothing or body, for whatever reason, you are probably looking at her face, i.e., her. Sarah mentioned studies which showed that men’s eyes tend to roam all over a woman dressed in Western clothing and tend to focus on the facial gestures of a woman dressed in Eastern garb. When you are talking eye to eye with a woman like Sarah, as it became instantly clear, the bullshit factor in the form of subtle social and sexual cues goes way down and you just talk. In a way, it’s liberating for both parties.
Sarah loves her new life. She said she felt freer to be herself in Qatar than she ever did in the States. Muslim woman wearing head dresses in the US are often feared and avoided. Their modesty is suspect, like they’re Stepford wives in hejabs taking orders from terrorists. Sarah certainly didn’t seem oppressed or beaten down or fearful, the usual notion Americans have about Arab women after our media exposure to the Taliban. She had a career that she is passionate about, a family, and a religious foundation that gave her life direction, meaning, and fulfillment. The fact that she chooses not to be picked up and spun around by big ol’ Uncle Charlie every time she visits the farm seemed meaningless in the face of the confidence and compassion she embodied.
Confidence and compassion—those are two human qualities shared by a lot of the participants at the Shafallah Forum. God knows your average Qatari radiates confidence—he or she is part of a robust, ever-expanding culture that invites at least passing comparisons to a carbon-based social Valhalla (at least for now). On the other hand, the compassion that brought about the Shafallah Center itself, the Forum, and the open acceptance of everyone from Ami to the First Lady of Rwanda—who knew about that? Again, caring and compassion toward the least powerful members of society is not something that Arabs are known for in the American press.
I witnessed the most bracing confidence and compassion of all in the presence of Ami, Larry, and many of the other severely disabled participants. Not arriving at this forum as a seasoned professional in the fields of education or social services for people with disabilities, I’m sure there were a thousand valuable insights and gems of knowledge that totally escaped me. And even though our group shot what will hopefully turn out to be an informative and entertaining video about the whole experience, we weren’t there to do hard journalism, to ask the tough questions about what is “really” going on at Shafallah, Al Jazeera, or in the backrooms of the Qatari Ministry of Finance. We were there to get first impressions, and as your mother repeatedly told you as she dressed you for your first job interview, first impressions count.
Impression-wise, this event was a stereotype-breaker of the first order. For all the gold-leafed table settings, the mounds of shrimp curry and chocolate mousse, and the best-behavior friendliness of everyone involved, there was something going on here that transcended the well-mounted international feel-good gathering. There was an ease of association and respect among the rainbow-diverse participants where politics, money, power, and privilege, at least momentarily, had no place. Being disabled, all you really want is for the rest of the world to treat you without prejudice or presumption, to tolerant your difference. It’s not all that much to ask, but for most of the world, including Los Angeles, it’s still a ways down the road. For a couple of days in Qatar, it was business as usual.
by Allen Rucker
Allen Rucker is a best-selling author, public speaker and writes regularly for this magazine.
