Thanks to decades of change–both technological and social–more and more Americans with disabilities are finding the wider world open to them. But are we open to the world? Which of our expectations should we take with us to other countries, and which ones are better left at home? These three adventurous wheelers–living on three continents–have discovered the sort of independence that can’t be won simply by passing laws and building ramps.
Sydney, Australia, is a long way from Julie Haraksin’s hometown–and not just geographically. Growing up in Downey, Calif., she never imagined that she would one day be living in the Land Down Under. “In the mid-1980s, when I saw the Paul Hogan ‘throw another shrimp on the barbie’ commercials, I used to say it would be a great place to visit, but never in my wildest dreams did I think I would live in Australia and drive over the Sydney Harbour Bridge every morning to get to work.” The city–one of the jewels of the Southern Hemisphere–has a mild climate, a cosmopolitan flavor, and vast expanses of beautiful countryside surrounding it. “It’s absolutely magnetic,” she says. “I never tire of driving through the bush, amongst the tall skinny eucalyptus trees, or of sitting at the beach watching the waves crash along the white sands.” A longtime disability rights activist, Haraksin, 44, who has osteogenesis imperfecta, considers herself fortunate to be part of a disability community that is strong, empowered and eager to bring about positive change for people with disabilities in her adopted country.
Her feelings, however, have not always been so upbeat. Once, boarding a plane after a visit to the United States, Haraksin was asked by a flight attendant if she was looking forward to coming home. “No,” she replied. “I am preparing myself to be a third-class citizen.”
Following their marriage in 1989, Haraksin and her Australian-born husband, Ian Irwin (who also has OI) had many factors to consider in deciding where to settle permanently. Not surprisingly, disability issues were near the top of the list. Wheelchair access in the central business district, where she and Irwin both work, was poor compared with what she was used to, and accessible public transportation was unheard of–a tough adjustment for a native Californian now without a car for the first time in eight years. “Our only transportation was Ian’s station wagon,” she says.
In response, Haraksin became actively involved with Australia’s burgeoning disability movement, with which her husband was already connected. In the early 1990s she and a friend formed Citizens for Accessible Public Transport, using ADAPT-style protest tactics–such as blocking traffic on one of Sydney’s main streets during rush hour–to draw attention to the lack of transportation for people with disabilities. Since then the situation has improved noticeably, with curb-cuts proliferating throughout the city and new construction–particularly since 2000, the year Sydney hosted the Olympic Games–geared toward accessibility. And yet here, just as in the United States, complete accessibility is far from a reality. Although the city has begun to install wheelchair lifts on its buses, the line that runs right past Haraksin’s house–and stops within wheeling distance of both her and Irwin’s workplaces–remains inaccessible. “Even now, in our home, we can’t go anywhere without our cars.”
Overall, though, their decision to live in Sydney permanently has worked out in their favor. Their home, in a well-kept neighborhood just north of the harbor, includes an add-on with state-of-the-art accessible bathroom and kitchen. Currently a disability policy specialist for the attorney general of New South Wales, Haraksin has realized professional goals that would have taken an additional 10 years to achieve in the States. And the Aussie standard of four weeks or more of paid vacation per year allows her and Irwin, an attorney, to indulge their love of travel. “Living here,” she says, “has given me a much broader picture of the world and of the U.S.A.”
One of the best-known world travelers who uses a wheelchair is journalist John Hockenberry. His experience on assignment in the Middle East also gave him a unique perspective on his home country. In Moving Violations he wrote, “The surprise about working in the Middle East was just how much easier it was in so many ways than living in America. In America access is always about architecture and never about human beings. Among Israelis and Palestinians, access was rarely about anything but people. While in the U.S. a wheelchair stands out as an explicitly separate experience from the mainstream, in the Israeli and Arab worlds it is just another thing that can go wrong in a place where things go wrong all the time.”
Americans are an optimistic bunch. Unlike people in the war-torn places Hockenberry has visited, we have the luxury of believing that everything will be OK–or at least, that everything should be. Where disability is concerned, our society’s responses are mechanical: to build ramps, to hold telethons, to march on Washington, to develop new and improved adaptive gadgets, to pass laws mandating equal treatment, to litigate when those laws are not enforced. For better or for worse, this fix-it impulse is part of our cultural make-up.
But what if a situation can’t be fixed with lawsuits or gadgets?
Joe Arnold, 38, has lived in Monterrey, Mexico, since 2001. The day he enrolled as a student at La Universidad Autonoma de Nuevo Leon, Arnold–who uses a wheelchair because of muscular dystrophy–learned that his Spanish classes were on the third floor of a building with no elevator. “The director said, ‘Let me see what I can do, if I can move it to the first floor.’ I was with another friend and about ready to go into angry crip mode … when my friend said to me, ‘If you are going to do what I have seen you do in the States in these situations, I will leave. You are in Mexico and an angry person shouting in public is not accepted. Give her the opportunity to see what she can do.’ The director called me the next day and said she had moved my class to the first floor.”
For Arnold–an ADAPT activist back in the States–the tendency to go into “angry crip mode” was something he would have to unlearn if he was going to live in Mexico. There is an active disability community, and most new construction conforms to international standards of accessibility, but Arnold says overall access “was and remains poor.” And the country’s widespread poverty and glacial pace of social change mean that the situation won’t see dramatic improvement anytime soon. “I will go out by myself in my colonia (neighborhood) because I know the access is OK,” Arnold says. “Most of the chain stores and malls have fairly decent access. But if I go to another colonia or downtown, I always go with friends because the access is horrible.”
In a city where the average person earns only $5 per day and many of the buildings date from the 16th century, access is not often readily achievable. What the country lacks in physical access, however, it makes up for in willingness to lend assistance–and, Arnold says, in simple one-on-one respect. “Never have I had anyone offer me help out of pity. Help is always offered out of necessity.”
This spirit of helpfulness was also apparent for writer and filmmaker Jerry McGill of Eugene, Ore., when he lived in Germany. While richer than Mexico, the countries of Europe face similar challenges in making centuries-old cities accessible to people with disabilities. “If I’m going up a steep hill, or if I approach an entrance with a step or two, within a matter of seconds someone will respectfully volunteer assistance. Kann ich helfen?–’Can I help you?’ was a phrase I heard often in Germany.”
A quadriplegic married to a U.S. military employee, McGill has experienced many different cultures–and seen many different attitudes toward helping, or not helping.
“In Moscow, New York, San Jose–in many places–I’ve encountered the ‘aggressive’ helper, who will just grab my wheelchair without prompting and force his or her help on my unsuspecting self,” he says. “In the U.S.–especially on the West Coast–people may be as helpful as any German, but in the spirit of giving someone their independence, they won’t necessarily volunteer their help. You need to ask for it. Or look really desperate.”
In Mexico, Arnold says, “It’s like everyone knows the access sucks. The buildings are old. The environment does not always provide space for a ramp, or perhaps the owners just don’t have money to build a ramp.” He says offering help without reservation “is a way of saying, ‘Hey, sorry the access sucks, but with help we can get you where you want to go. In other words, access is about people, human beings, and not about the environment.”
Moreover, Arnold says, it’s rare where he lives for people without disabilities to park their cars in disabled-only spaces. “Now that was a culture shock.”
Access and disability rights are two sides of the same coin. Many Americans with disabilities undoubtedly believe that their approach to disability rights is the envy of the rest of the world. But the movement for empowerment and integration of people with disabilities has always been a global one. In Australia, the Disability Discrimination Act–a federal law analogous to the ADA–was passed in 1992. Since the early 1990s similar acts recognizing the rights of people with disabilities have either become law or are being drafted throughout the English-speaking world, as well as within the European Union. Following the end of apartheid in South Africa, that country became the first to incorporate disability rights into its constitution. Worldwide, an organization called Disabled Peoples International–now active in 135 countries–has promoted disability rights since 1981.
In America, our emphasis on rugged individualism and history of social protest and reform have resulted in a climate where our rights are respected (or at least discussed), but the support services that many of us need to stay independent and out of poverty are still seriously lacking. Other countries, meanwhile, provide a generous array of services, but do so out of a sense of charity and paternalism that can rankle a veteran crip activist. Is reconciling these two approaches even possible?
Haraksin says when she first moved to Australia, “Most disability services, both public and private, were still driven by the charity model: ‘We have an obligation to look after people.’ Services were not driven by a rights-based perspective at all. While this difference used to annoy me, the benefits are tangible–people with disabilities can secure attendant care, most people with disabilities who do not work are provided housing.” The downside, at least until recently, is a certain complacency over access issues–in transportation, public facilities, employment, etc.–that the American disability community considers paramount. “The disability movement [in Australia] has been slower to fight for its rights, because the essentials have been easier to get.”
Since the passage of the DDA, however, the idea of treating people with disabilities as having rights–not just needing services–has become increasingly prominent. In 1993 disability activists in New South Wales pushed for the passage of the Disability Services Act, which required that government services at the state level be provided in a manner that respected the rights of people with disabilities. “Over the past 14 years,” Haraksin says, “people have become more demanding–to demand more, not just [settle for] what we think we can get.”
It Takes a (Global) Village
In the last couple of decades, one consequence of the disability movement is that people with disabilities all over the world have become more mobile. The proliferation of accessible tours, disabled travel guides in print and on the Web, and travel articles in publications like New Mobility testify to that. Perhaps having that sort of personal contact can help disability communities all over the world to learn from each other.
If there is one thing Arnold has discovered living in Mexico, it’s the importance of having a supportive community around him. During a recent illness, people in his colonia were there for him–to cook meals, to get medications, to serve as emergency attendants, and generally to provide services of which not even the most well-funded social safety net is capable. “The people here are generally poor, just earning enough to pay the bills and put food on the table. They don’t have the time or the money to organize. They just want to live their lives. Yet because they all know–disabled and nondisabled–that they are in the same muck together, they all support each other.”
They support each other, he says, because in contrast to north of the border, Mexican society is in no hurry to remake itself. “Change here happens slowly. In the U.S., the people are at the mercy of time. In Mexico, time is at the mercy of the people.”