By Harriet McBryde Johnson

T he day I traveled to Cuba, I was lifted 15 times. Lift 14 was the worst. A pair of paramedics toted me down steep stairs from the belly of the plane to the tarmac. Havana's Jose Marti Airport still has no jetways. It reminded me of my home--Charleston, S.C.--back before Section 504.

I went to Cuba in October 1997 to attend the Second International Conference on the Rights of People with Disabilities. My mission was to explore the state of disability in a socialist country at a crossroads--or so I stated on the permit application I filed with the U.S. Treasury Department.

But there was more to it. My family went to Cuba in the summer of 1959, just after--as I heard endlessly in Havana--" the Revolution triumphed." I don't remember the trip. I was only 2. And within two years of our visit, the United States severed diplomatic relations, sponsored an invasion and imposed a trade embargo. The island we reached by ferry from Florida in 1959 became impossibly distant. But I had always wanted to go back to the place that lived in family legend as a beautiful land of hope and excitement. My sister Beth, always ripe for adventure, signed on to go as my attendant.

A Different Cuba
Inside the airport, we are directed to a cubicle marked "Diplomats." Normally I'd call this "special treatment for special people," but this time it means we're from the USA, an enemy state. The door closes. The inside knob has been removed. Trapped! The militiaman leans out of his window to compare me with the less-lined face on my soon-to-expire passport. Close enough, apparently; the rubber stamp slams down. The door opens and Beth and I are admitted to the friendly chaos of Cuba.

Punchy from travel, we find that our Spanish works. Sort of. We're from the United States. We're attending a conference. About the undressed. I mean disabled. We are waiting for transport. Special transport. With an elevator for the chair, I hope.

In no time the special transport arrives--a rusty city bus with some seats removed and a lift that would look right moving crates of beer. There are no tie-downs, so Beth wedges her leg against my wheel and holds tight. I wish I'd put a seat belt on my chair.

We know that we've returned to a very different Cuba. Before 1990, 85 percent of Cuba's trade was with the Socialist bloc. With the collapse of the Soviet Union, that trade--along with billions of dollars of Soviet subsidies--is gone. At the same time, the United States has tightened the trade embargo. Imports are down 75 percent, the gross domestic product down 34 percent. Industry has virtually collapsed. The island is largely cut off from the global economy. Everything is scarce. In what they call "This Special Period," Cubans are experiencing real hardship. But the government has declared its goal of a self-sustaining economy that provides every citizen with necessities. The main hope for development is tourism. The top priority is food production.

The next morning, the conference starts and we begin meeting more than 200 people from 18 countries. There are nine from the United States, some Germans, Canadians and Spaniards. The rest are from Latin America, mostly Cuba. I get out my legal pad and plug the translator into my ear. I'm ready to find out the deal about disability in Cuba.

The conference sponsors are three official Cuban organizations of people with disabilities. Two groups represent people who are deaf and hard of hearing and those who are blind and visually impaired. The third, La Accociación Cubana de Limidados Físico-Motores (ACLIFIM), represents people with "physical-motor" disabilities--essentially, crips.

These are Cuba's establishment crips. They work within their system, as it is, much like our officially sponsored groups such as the President's Committee on Employment of People with Disabilities. But there are differences. Our official committees endlessly host conferences, issue press releases and write reports in their efforts to convince government and corporate power to do right. The Cuban organizations, in contrast, are real participants in policy-making. They represent their constituencies and some 75,000 card-carrying members, just as trade unions represent theirs.

In Cuba, there's nothing like ADAPT. But then, there's nothing like the MDA telethon. Our organizations evolved in our system of competing power centers. For example, ADAPT uses media and politics to fight corporate and governmental power; MDA works media and business to feed a money-driven machine. But in Cuba, power is centralized. The economy, the body politic, the law and the press are all controlled by the socialist state, and disability organizations mirror this centralization.

Centralized systems resist change, but when change happens, it can be fast. For example, sign language was forbidden in Cuban schools until the organization for people who are Deaf convinced the government to reverse policy. Once that happened, change came with astonishing speed. In three years, Cuba researched "underground" signing systems, standardized the vocabulary and grammar, and in one fell swoop "Cuban Sign" was standard in Deaf education. The next step must surely be to get signing in higher education--the minister of education told us that speech is still among the "skills" needed for university.

Stupid Questions

The kids act cute, answer questions, pose for pictures. What will they say about the visitors later?

Beth and I sign up for a tour of the Solidarity with Panama School, a "special" school for crips. With a large number of International Crips, we pile into those crazy lift-equipped buses and ride past crumbling stucco buildings. Again, I think of Charleston before a huge infusion of government and corporate capital restored our downtown. On the streets I see people in shades ranging from ivory to chocolate. Like Charleston. There is dense vegetation--vines, palm trees. Like Charleston, only more so.

We get off the bus and roll into the beige lobby of the school. That sense of being back in time gets stronger.

"Looks awfully familiar," I tell Beth. She sees it, too. It's like the "special" school where my friends and I used to hang out in the lobby when visitors came. Gathered in little clusters, these kids are like us, except that I don't see the expected scattering of really hard-core crips--I mean the ones we used to call (with all the tact of childhood) the droolers, the spazzos, the hideous. Where are they? Off in less tourist-worthy facilities? I'm not sure I want to know.

The principal gives a lecture. Much of it I don't understand, but I hear that these kids live here because they need services not available in regular schools. That's what they said about us, too. There are 427 special schools throughout Cuba.

"May I ask you stupid questions?" "Certainly," he answers.

We are invited to roam around. Go anywhere. Talk to anyone. We look for the special equipment. One room is full of drafting tables with high, built-in seats, but few of the children I've seen could sit at them and there's no sign that they've been used. They're probably cast-offs from some trade school; at my old school, we occasionally got such strange donations. On a paved area outside, young wheelers are zooming around. Then we see the physical therapy area. Floor mats, parallel bars, nothing fancy. Any of it could be placed in any school. I notice that the place smells fine. That means it's clean--in a tropical climate, the nose doesn't lie.

Four girls sit at a card table. They act cute, answer questions, pose for pictures. We, too, used to act cute and engage visiting dignitaries in conversation. But when the visitors left, we had a contest among ourselves: Who'd met the stupidest visitor? Bonus points for a pat on the head!

Now I'm one of those visitors. I don't like it, but what can I do? We wander some more. There is a bulletin board about Che Guevara, the Revolutionary hero who was assassinated in Bolivia by our CIA. We pass the library. Very few books, as in my old school. But maybe things are so scarce in Cuba that it's no worse than in a regular school. I see a teenage boy sitting alone. He has a lovely face and skin like a cafe cortado. I bite the bullet and ask if he'll talk to me. He shrugs. I start with the basic questions, but then I back up.

I say, "When I was a young girl ... ." I stop, looking for the past tense. The boy wants to help.
"You went to this school?"

"No, not this school. A similar school, in the United States." His eyebrows shoot up. Like most people, he's amazed to meet someone from the terrorist country that murdered Che. I continue, without the past tense. "In our school, groups come to visit us, and we hate it! Oh no, we say, another group! Always some group! We must smile, answer stupid questions ... ."

The boy grins, then covers his mouth. I hope I won't be the Stupidest Visitor when the kids run their contest.

"May I ask you stupid questions?"

"Certainly," he answers.

With Beth's help--she can conjugate verbs--I learn he's 17 years old. He doesn't know what he'll do when he leaves the school. He might like to go to university. He might get a job. He doesn't know. In my school, there were some kids who had wild hopes of a fantastic future. We called them Impossible Dreamers. But the cool kids didn't express their hopes. I'm not sure why. Bad luck, maybe?

"Would you like to ask me questions," I ask.

"No," he laughs, behind his hand. It's obviously the first time he's been invited to ask questions. We say goodbye. "Don't you want to take my photograph," he asks. We do.

I'm glad I met him, even if I still don't know him. I'll always wonder how his life is going. I can only hope that his world will change, as mine has, and that one day he will have what he doesn't dare hope for now.

No Big Deal
There are all kinds of rules here we don't understand. At the conference, in the hotel, everywhere, there are procedures that no one explains. One night they bus us to another hotel for a party. It gets late, and a large group assembles to catch the bus back. We wait, in plain sight of the bus and driver. No one knows when we will leave. It makes me nuts. I'm a lawyer. I like to know what's up. I start questioning the ACLIFIM members.

In Mexico, people were afraid to look at me. In Paris, cabs wouldn't stop. In Havana, I'm a person.

Courteously, they assure me they're not in charge; there's nothing they can do. Politely, I press on. Who is in charge? Is he here? Let's ask him. Let's tell him about the problem. I'm sure he would like to solve it. Too late, I realize I've gone too far for such a small complaint.

Cubans eagerly tackle big problems. The Revolutionary generation stamped out illiteracy, eliminated unemployment and provided universal health care. That spirit endures. Cubans are determined not to go back on a single constitutional guarantee, and to include all people. Collectively, Cubans are activists. But individually, they seem passive. They wait patiently, shrugging off little problems that could, so easily, be solved.

At the conference, overwhelmed by facts poured through our plastic earphones, we escape to spend an afternoon in Old Havana. Curbcuts are nonexistent. Sidewalks and streets are full of holes and broken pavement. I'm glad I opted against the power chair this trip.

We come to the open-air market near the cathedral--where private entrepreneurs are permitted--ready to spend exactly $100, our limit under the U.S. embargo. The street has been blocked, and the sidewalk has a high curb with a big chunk missing. I'm about to tell Beth to go in without me when a man pops up and helps her haul me over the barricade. We thank him and he shrugs. It's no big deal.

Throughout the day people help, and it's never a big deal. It's hard to pin down, but here I get the feeling that being a crip is no big deal. People talk to me. In my hometown, strangers tend to address my nondisabled companions, not me. In Mexico, people were afraid to look at me. In Paris, cabs wouldn't stop. In Havana, I'm a person.

We go to the Museum of the Revolution. We bypass two steps by cutting across the sloping lawn, then bump up three more. Inside, a sign says there's a fee to use the elevator. As soon as we come in, there's a little staff conference.

"You can use the elevator at no charge," they tell us, "but it doesn't go to the fourth floor." In the elevator, we point to the button marked 4. "Doesn't work," we're told.

Our guidebook says the fourth floor houses an anti-U.S. exhibit called the Hall of the Cretins. Beth, a North Carolina resident, is pretty sure her senator, Jesse Helms, will be there. After we've toured the third floor, Beth proposes to walk up the stairs.

"No," says a guard, "it is time for you to go down now." We don't argue. They probably think the exhibit will offend us.

We sit in a park and make some instant friends. I keep waiting for these young men to launch into some hustle, but it doesn't come; I guess we're experiencing the famous Cuban love of conversation. Our friends don't carry on about my disability. We talk about Cuba, the United States, racism in the South, what will happen when Castro dies. Maybe the years of egalitarian propaganda have had an impact. Maybe these Cubans have managed to learn what the disability rights movement tries to teach--that we are all in the struggle together.

The Promise of Equality
The Special Period is forcing a reappraisal of disability policy. When Cuba was a Soviet dependent, it was a kind of poster child for Marxist-Leninism. Its subsidized research facilities were a showplace for Soviet high tech. Today, Cuba must do more with less. The result is a greater emphasis on community-based services, primary care, family involvement, and increased access to mainstream jobs and resources. Not bad things.

Cuba's current disability policy is conveniently set forth in its 1995 Plan of Action for People with Disabilities. I'm excited to get a copy, which I can read for myself with the help of my Wal-Mart electronic translator. It's a concise document describing 36 programs in 13 areas. It ensures that there will be no architectural barriers in new construction. For existing barriers, there's a systematic process of inspection and prioritization--but no timetable for barrier removal. It calls for employment in regular jobs. In education, there are provisions to ensure that special schools prepare students for higher education and for productive work. Mainstreaming, however, is still a matter for study and experimentation. About personal assistance services, there is silence.

The plan reveals a system where well-intentioned experts decide what's best for people with disabilities--as they decide for people without disabilities. There's not much discussion of choice or freedom. But then, I ask myself, what does freedom really mean for the Average Crip in our system? Living hand-to-mouth in the community or languishing in a nursing home, the Average Crip is guaranteed liberty and due process, but not health care, housing or a living wage. Knowing how little real choice there is at the bottom of our pecking order, I'm impressed by a society that doesn't accept inequality as simply a regrettable fact of life. In Cuba, inequality is intolerable.It's unpatriotic!

The material and social achievements of the Cuban Revolution are undeniable. A government official tells us: "The promise of the Revolution was to enable every person to enjoy life and to contribute to social transformation." That promise remains unfulfilled, but our own society has never pledged so much.

The Cuban Conundrum
I'm a fairly vehement disability rights advocate. "You can't put a price tag on civil rights," I say, whenever someone mentions the cost of barrier removal, personal assistance or job accommodations. But Cuba shakes me a little. If you can't get paper to print phone books, spare parts to keep factories going, bricks, mortar and paint, how much can you invest in disability rights? Who gets priority, disabled Cubans or disabled tourists whose money can bring in more goods? Should a computer be used to train scores of university students, or to enable one child with cerebral palsy to "talk"? Scarcity means there are winners and losers.

And scarcity is laid at the door of the United States. "Inadequate services are not due to a lack of political will," an official from the Ministry of Labor and Social Security tells us, "but due to the cruel embargo from the north." Ironically, the embargo--aimed at undercutting public support for the Cuban government--has had the opposite effect for these 35 years. People pull together when faced with an external enemy.

I wish the United States could be on their side, instead. I can't help being impressed by this ramshackle society tackling the biggest social problems under the most trying circumstances.

"Every morning," says one official, "we wake up believing in our dreams because we have seen them become real."

It's propaganda, I know. But it's hard not to be moved, here in Cuba at this time in history. Cuba was a Spanish colony for 400 years, a U.S. outpost for 60 years, a Soviet satellite for 30 years. And now, for the first time since 1492, Cuba is in charge of its own destiny and thumbing its nose at the world's remaining superpower. I head home hoping Cuba will find a way to adapt to a changing world without surrendering the vision that makes it unique.