Disability Access News

By Connie Paige
Globe Correspondent / February 28, 2008

During the 2006 Mother's Day flood, city workers in Lowell had to call around to find fresh clothing for nursing home evacuees. A failure to stockpile changes of underwear was just one of many shortcomings in disaster planning that have prompted a top-to-bottom review ever since.
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But in Lowell and across the state, officials continue to face obstacles planning for the elderly and disabled during disasters. Confusion remains about the relative responsibilities of state and local authorities - a problem complicated by a shortage of funds.

Dogs and cats seem to have received more attention from the state's emergency management officials than people with disabilities, according to an advocate who has prodded various agencies for two years to develop emergency plans for those with special needs.

"There is progress," said Bill Allan, executive director of the statewide Disability Policy Consortium. "Is it enough? No. Are we any better off now than we were two years ago? I doubt it."

As the US Centers for Disease Control and Prevention concluded in a report issued last week, big challenges remain in emergency readiness nationwide. In Massachusetts, officials from three agencies that deal with it - the Massachusetts Emergency Management Agency, known as MEMA; the state Department of Public Health; and the state Office on Disability - point to a renewed commitment to disaster planning under Governor Deval Patrick, with attention to the needs of the disabled.

"In the last year or so, we certainly have jumped in with both feet," said MEMA spokesman Peter Judge.

Tom Lyons, spokesman for John Auerbach, the state public health commissioner, acknowledged that the state probably had not done enough in the past. "We're trying to change that," Lyons said. "We're trying to adjust, and refocus our efforts to make sure we're doing the right thing."

But local officials and advocates bemoan the absence of clear statewide guidelines for aiding the disabled during disasters. Local officials have tried to cobble together their own plans, but many come up short.

Concord Fire Chief Kenneth Willette, leading a townwide effort to include the disabled in the local emergency plan, said the first step is drawing up a registry of residents with special needs. But this is not as simple as it might seem.

Obviously the list should include "folks with limited mobility, folks with limited cognitive ability," Willette said. But do you incorporate people with limited English-language ability? Children with autism? All the elderly?

And once the disabled are identified, the community may need a specialized communication system to reach them during an emergency, he said. Then there is the difficulty, and expense, of equipping emergency shelters to adequately care for some of the disabled, such as those requiring a ventilator or kidney dialysis.

"Those folks really need electricity, they need to have their medical equipment with them at all times, and, in some cases, they need to be able to . . . remove the waste products," Willette said. "That's a challenge."
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Providing specialized transportation, supplies, medicines, bedding, and personal care assistants for the disabled also can prove taxing, he said.

In view of the hurdles, including the strain on budgets, officials stress that the disabled should exercise personal responsibility, and that caretakers for the disabled should have backup plans.

"No community is going to be able to pick up all the disabled people and take care of them, said Leo Saidnawey, Belmont's emergency management director. "Just like [the] able-bodied, they're supposed to be prepared."

Lexington Fire Chief William Middlemiss said the trend toward fulfilling some needs is to go regional instead of local.

"We're trying to break down the governmental lines," said Middlemiss, chairman of the Battle Road Regional Emergency Planning Committee, which includes Arlington, Bedford, Belmont, Burlington, Lexington, and Medford. "If a disaster ever happened, it's going to affect populations in neighboring communities."

But when the community or the region lacks resources, officials also can turn to MEMA, said Frederick Tustin, a Winchester Fire Department captain and chairman of the Mystic emergency planning committee covering Medford, North Reading, Reading, Stoneham, Winchester, Woburn, and beyond.

Myra Berloff, director of the Office on Disability, said help is also available from her agency. She said that under the 1990 US Americans with Disabilities Act, the state is required to address needs, and she has set in motion programs to convince state and local emergency officials that they must and can fulfill those needs.

"Where we started two years ago with distrust and dissent, we now have cooperation and understanding," Berloff said. "We have come 180 degrees, from being adversaries to being partners. It has been quite a journey. Are we perfect? No. Are we working toward being better? We sure are."

Next month, for example, Medford will host a forum for the city's disabled and first responders sponsored by the disability agency, following one in Chelmsford this month.

Diane McLeod, Medford's diversity director, serves as coordinator for 20 similar forums to be held by June across the state. She said booklets will be distributed to emergency officials to help them cope with nine categories of people with disabilities, including seniors; people with service animals; those with mobility, hearing, or vision impairment; and those with cognitive disabilities, chemical sensitivities, autism, or mental illness.

Berloff said she hopes to extend the forums to other communities if she can obtain state underwriting grants.

While acknowledging state and local budgets are stretched thin, Berloff said, "Not everything costs money.

For example, she said, shelters can be prepared for the disabled who are in wheelchairs simply by adding a ramp, and people on ventilators need only to have a plug to power them.
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"A lot of it is a mind-set," Berloff said. "The biggest obstacle is lack of knowledge or understanding."

Moreover, she said, the disabled should prepare for disaster by stockpiling necessities such as medication, and determining ahead of time where they might go for assistance beyond what a shelter can offer, such as a local hospital or nursing home.

Berloff said a forthcoming report will include recommendations earmarking which improvements cost nothing and which will require an infusion of cash.

In February 2006, Berloff spearheaded a gathering of about 200 state and local emergency planners, officials from MEMA and public health, and people with disabilities, who undertook the task of detailing gaps in disaster preparations. The report is being developed by task forces focusing separately on registration, personal preparedness, communication, evacuation and transportation, and sheltering of the disabled.

Lyons said he believes the report will help usher in a new sense of responsibility toward the disabled during emergencies. "We have to narrow our focus to the people who need it the most," he said.

Judge said MEMA officials hope the report will clarify the chain of command in a disaster. He said the agency has hired an accessibility and inclusion planner to help sort out goals.

Still, some remain skeptical.

Frank Singleton, Lowell's health director, said he is still frustrated - more than six years after the terrorist attacks on Sept. 11, 2001, and almost two years after the Mother's Day flood - about emergency planning for the disabled.

Singleton said a recent decision to use the University of Massachusetts at Lowell as one of three regional emergency shelters around the state shows how the best of intentions can get mired in interagency wrangling.

Authorities have estimated that of the 5,000 who might flock to the Lowell shelter during an emergency, about 500 might have disabilities, Singleton said. But, he said, local, regional, and state officials are struggling with questions about who would use the shelter, who would bankroll it, and who would stock it with necessities - while providing for the needs of the disabled.

"My first question, which has been asked over and over again, is, who is in charge?" Singleton said. "Is it the hospitals, is it the city of Lowell, is it UMass-Lowell, or is it MEMA?" Singleton said that question has not been answered.

SALEM, Ore. (AP) — So a U.S. Senate candidate with a metal hook for a left hand walks into a bar.

The candidate, Steve Novick, has bellied up next to a voter and the two talk about politics. The other guy struggles to twist off a beer cap. Novick coolly reaches over, grabs the bottle and deftly uses his metal hook to pop it open, telling the other man: "We can't afford just politics as usual."

It's a political ad unlike any other this season, and the video has become a hit on YouTube.

Novick, who was born with multiple disabilities, is going right for the funny bone in his bid to challenge a Republican incumbent.

His second TV ad, which spoofs the old TV game show "To Tell the Truth," plays on his stature — he's only 4-foot-9.

"I'm Steve Novick," intones an evenly tanned, perfectly coifed gentleman in a natty suit. "And I'll stand up for everybody, not just the richest 1 percent."

Then the camera pivots down, way down.

"Actually," Novick says, "I'm the real Steve Novick. I don't look like the typical politician, but I won't act like one, either. I will fight for the little guy."

Novick, 44, is seeking the Democratic nomination to take on Oregon Sen. Gordon Smith, who, like the other man in the second commercial, is tall and good-looking.

Unfortunately for Novick, the Democratic Senatorial Campaign Committee has chosen to back Oregon House Speaker Jeff Merkley in the May 20 primary, and has already directed nearly $100,000 to his campaign.

What little polling has been done in the Democratic race showed the two candidates were virtually tied as of last month. Most people surveyed said they were undecided.

Novick, a Portland lawyer, hopes the ads draw attention to his personal story of overcoming disabilities. Besides his left hand, he is missing one of the two major bones between the knee and foot in both legs, giving him an uneven gait.

He graduated at age 18 from the University of Oregon and later was the youngest member of Harvard Law School's Class of 1984.

As a U.S. Justice Department lawyer, he battled polluters before returning to Oregon to fight against anti-tax and anti-union initiatives.

Both of Novick's campaign ads were produced by a Milwaukee firm that helped Russ Feingold win a Wisconsin Senate seat in 1992 by contrasting the little-known challenger's modest home with the fancier home of his well-heeled opponent.

"It's nothing to shy away from and nothing to hide," said Neal Bardele, a partner with Eichenbaum & Associates. "He is a very confident man, a very intelligent man. One of our objectives is to get people to know him, and to know he is not a traditional politician."

In another YouTube video, Novick supporters can be seen wearing T-shirts emblazoned with "Hooked on Novick," showing tiny metal hooks on the letters.

"What he's done is shown that you can have pride as a disabled person," said Bob Kafka, national organizer for a disabled-advocacy group called ADAPT in Austin, Texas.

Novick's campaign is the "next evolution in disability rights," Kafka said. "We've not had visible candidates, and that's increasing."

But political humor has to be delicately applied. Overuse it, and politicians can risk falling flat, as Connecticut Sen. Chris Dodd did in a widely panned TV ad joking about his mane of white hair that ran in Iowa last fall.

Rudy Giuliani drew groans for a holiday commercial in which he schmoozed with Santa while wearing a Rudolph's nose-red sweater vest. Hillary Clinton was lampooned for a Christmas ad in which she was seen wrapping "presents" to give to the country, marked with tags reading "universal health care" and "bring the troops home."

Voters can also be skittish about candidates who run funny ads in a country that's perpetually on orange terrorism alert. That's one reason why strategists for comedian Al Franken kept a lid on laugh-out-loud material in his opening round of TV ads for the Minnesota Senate race.

"Al is taking this campaign seriously, and if he uses humor, it will only be in the service of talking about the very serious reasons he is running for the Senate," Franken spokesman Andy Barr said.

In Oregon, the race between Merkley and Novick has been civil. Merkley even made his own attempt at humor. A few weeks ago, he walked away from a rollover car crash with just a bump on his head.

In a video released by his campaign, Merkley is shown dangling upside-down in a rolled-over car. He says into his cell phone: "We just flipped the car. It's just like the Bush economy. It's gone belly up."

ALBANY, N.Y. - The state Board of Elections approved a new voting machine Wednesday despite advice from a citizens' committee that many disabled voters won't be able to use it.

The board approved the Liberty Election Systems machine for temporary and experimental use. The decision came after an independent testing lab determined it was technically sufficient, but the citizen's committee warned it didn't meet federal voting law standards for use by the disabled.

New York is years behind federal deadlines to conform with the Help America Vote Act, enacted to improve voting accuracy and access for the disabled after the contested 2000 presidential election.

Under a court-ordered timeline, New York must have at least one disabled-access machine at some 6,800 polling places for the fall elections. The old requirement was one per county.

The Citizens' Election Modernization Advisory Committee, which was created to advise the elections board about whether new machines meet the requirements of the HAVA, was particularly concerned about whether the machines allow the disabled to cast their votes easily, independently and accurately.

The Liberty device and three others approved by the board Wednesday will be used this fall in the presidential elections.

The board had tentatively approved Liberty and five other machines so county election officials could place initial orders. This latest round of approvals elevated four of those machines to the next level of competition for the lucrative contracts.

Both SysTest Labs, an independent testing facility, and the citizens' committee rejected two machines previously in the running and the elections board voted against approving them. The machines _ made by Avante International Technology, Inc. of New Jersey _ were found to have intermittent technical problems and failed to meet various HAVA requirements.

New York has $190 million in federal funds to buy new machines. The state must replace all pull lever machines by the fall of 2009.

Dedication

Before I begin I would like to dedicate my comments today to my friend Topong Kulkanchit.

I met Topong in 2005. We decided to work together to see that a conference was held in 2007. Mostly through his hard work, early preparations were made so that Saowalak Thongkuay and Sawang Srisom and their team could make ICAT 2007 International Conference on Accessible Tourism a success.

Thank you. I look forward to our next gathering in Singapore in 2009. I challenge everyone to continue the work that Topong poured his life into.
Models of disability

We are here to do some thinking on a global scale. That's a big task.

Big thinkers like to give names to the boundaries they put around ideas - handles to make them easier to grasp. When we talk about disability we usually talk about these "idea packages" as models of disability.

The Charity Model, the Medical Model, and the Social Model are the names we usually use. The first two present people with disabilities as recipients rather than as sources of action. The Charity Model places people with disabilities as recipients of the moral responsibility of others to care for them. The Medical Model further limits responsibility to those with professional medical knowledge. Both models define the limits of the world that a person with a disability "really" belongs to: The world of family or its extensions of church or service organizations in the Charity Model and the world of the doctor or their delegate in the Medical Model on the assumption that the disabled person's highest and constant concern in life is to be "cured."

Both models prevent people with disabilities from political expression and economic participation as adults because both models assume worlds that are too small for real people.

After an introduction like that it is obvious that I am going to endorse the Social Model. It claims that the world where people with disabilities "really" belong is the real world, the whole world - like everybody else! That's a big world.

Universal Design is what lets us live at home in this world. Wheelchair user and architect Ron Mace, with his colleagues, set the foundation for everything we do at this conference by creating Universal Design more than 30 years ago. These thinkers in the Disability Rights Movement understood that our desire to be full participants in society required us to develop a simple elegant solution to achieve accessibility. The seven principles defining Universal Design start from the reality that not every individual has the same stature, strength, or range of abilities. Diversity between individuals is the "normal" in any collection of human beings - change in ability is the defining characteristic of each individual over time. Accessibility in tourism improves quality for the growing senior population too.

Universal Design is a framework for the design of places, things, information, communication and policy to be usable by the widest range of people operating in the widest range of situations without special or separate design. Most simply, Universal Design is human-centered design of everything with everyone in mind.
Trend 1: Creation of a market

I said we're here to think but to be more complete I should add that we're here also to dream. Imagination becomes alive in every person's life when the limits of their world go from family to some larger institution and finally on to the limitlessness of free participation in the whole world. Dreaming is the first step in thinking on that global scale - and everyone who works in the global travel industry knows what we do. We sell dreams and we make them real. As the disability community around the world acts on this dream of global participation the travel industry is here providing for them as what they have become - a market.

I have been invited here to talk about global trends in accessible travel.

I have just told you the first trend. A group of people with disabilities have gathered. They are the actors. They are the political and economic force. They, we, came here to say that we have a dream. That dream is the freedom to travel. They have become a market and they have their own voice.

As we gather for two days in Asia another group of people from all over Europe are going home. They have just finished two days of meeting on accessible travel at the European Network for Accessible Tourism - ENAT run by Ivor Ambrose. This trend - this dream - is global among people with disabilities.

Now let's think together.
Trend 2: The rights-based and profit-based approach to disability

The second trend we see is that a "profit-based approach to disability" is inseparable from our conference theme of "a rights-based approach to disability." Aiko Akiyama will speak to us next about the Biwako Millennium Goals where rights and development converge in tourism. Is there a profit-based approach to disability for the travel industry?

Research done by Eric Lipp and Laurel van Horn of the Open Doors Organization have taught us that American adults with disabilities or reduced mobility currently spend an average of $13.6 billion U.S. a year on tourism. In 2002, these individuals made 32 million trips and spent $4.2 billion on hotels, $3.3 billion on airline tickets, and $2.7 billion on food and beverages while traveling.

In the UK 10 million adults with disabilities have an annual purchasing power of 80 billion pounds sterling. In 2001 economically active Canadians with disabilities had $25 billion Canadian dollars available. Americans with disabilities or reduced mobility have $175 billion in purchasing/consumer power.

Cruise lines know from research that people with disabilities favor cruise vacations at 12% compared to 8% of the general population. Studies also show that people with disabilities are loyal customers: 59% report that they plan to take another cruise. Creating accessible cruise ships, accessible ship terminals, accessible ground transportation, and accessible tourist destinations in port cities is not charity. It is good business! In a few minutes I will tell you how stakeholders in North and South America are working together to build that business.
Trend 3: Standardization in the years ahead

Two years ago a group of us got together and began to plan for today. Then it was easy to report on trends in accessible tourism. The pattern was clear. The trend in 2005 was experimentation and local standardization in controlled regional environments. New "islands of innovation" were evident around the world. In fact, in most cases they were either actual islands like Crete, Hawaii, Tenerife, Japan, St. John's Virgin Islands, and Tasmania or they were geographically isolated regions like Western Australia.

The trend in 2007 is less about new invention and more about standardization across larger areas and on an international level. It is a new stage of maturity but it will be over in about two years when we meet next in Singapore - this time with our European friends.

For these next two years the main trend around the world will continue to be establishing common practices and agreeing on standards. Sometimes it will feel like a tug-of-war; pulling in two opposite directions: one direction pulls toward a rights-based approach to standards and the other a profit-based approach. The first starts with persons with disabilities as citizens; the second as customers. The first approach speaks in the language of governments; the second the language of business. Effective standards result when people with disabilities are active in defining both approaches. In fact, that is what this organization is about. It is a voice of people with disabilities in conversation with government and business to serve the interests of all three groups regarding travel and hospitality.

Let me anticipate 2009 with a grandiose statement about the historic importance of today:

The tourism industry has become a vehicle for social good. Industry practices increasingly honor green design and ecologically responsible practices. With Universal Design tourism has also become a vehicle for what the Disability Rights Movement has fought so hard to articulate and to achieve for more than 30 years. So here today we set the Disability Rights Movement on a new path accompanied by partners from business and government. That path of promoting accessible travel will pass through every country in Asia.

The trend when we meet again in Singapore in 2009, this time with our colleagues in ENAT from Europe, will be the emergence of Centers of Excellence that strategically disseminate sustainable innovations, grounded in standards, and fluent in customer service respecting the rights and dignity of people with disabilities. After ICAT 2007 I will spend time consulting with government and industry leaders in Pattaya to see if we can make Thailand one of the first of those Centers. I will assist UNESCAP create a set of guidelines.

From my work around the world I have three cases that illustrate the current trend toward creating standards of good practice: one example in South America, one in North America, and one in Africa. South America brings four countries together with the cruise industry around accessibility. North American national park officials draw in a business partner and showcase accessible cultural tourism. Africa is shaping a continental accessible tourism market through the research and advocacy of an entrepreneur with a disability who promotes safaris.
Three cases
Example 1: South America

The Inter-American Institute on Disability and Inclusive Development has formed a network to develop accessibility along the cruise corridor from northern Brazil to Tierra del Fuego at the southern tip of Argentina.

In 2007 disability advocates and organizations, government, academics, cruise lines, and the land-based tourism industry joined together as stakeholders to begin to adopt standards, infrastructures, and practices that guarantee a consistent quality of travel experience between Brazil, Uruguay, and Argentina for seniors and others with disabilities. The major activity at this stage is in Brazil which will host an international conference on Accessible Tourism in May 2008.

Individuals in the South American network have begun to appear in the media, speak at tourism conferences, and write articles on the value of this market of travelers with disabilities. Data is being collected on the number of people with disabilities and their purchasing power. One of the most rewarding things I do now is work with university students and young professionals in South America guiding their research, their career choices, and their businesses.

At the same time, accomplished architects like Veronica Camisão are drawing up plans for improved ship terminals. Wheelchair-using Brazilian architect Silvana Cambiaghi has published Brazil's first full-length book on Universal Design. Museum specialists like Viviane Panelli Sarraf simultaneously provide attractions of interest to international and domestic tourists with disabilities by making museums and other cultural sites accessible. Dada Morreira, Ricardo Shimosakai, and others with disability sell accessible land-based excursions that include whitewater rafting, jungle off-road treks, multi-sensory walks, parasailing, and exhilarating treetop tours.

In addition to this explosion of new businesses by people with disabilities, this group has written new regulation on maritime access to standardize accessibility in cruise ship terminals and on passenger ships serving Brazil. Industry and government, led by professionals, advocates, and business owners with disabilities have identified an underserved market and are building a strategy together to serve it.

Research shows that the more cruises a person takes the more likely he or she is to disembark in port and buy a land-based excursion. We know that more people with disabilities are cruising. We also know that they tend to take repeat cruises more often than the general public. They will grow disproportionately as a market inclined to take land excursions. Argentina has planned ahead for this trend. It is holding its first rural workshop on serving people with disabilities for the rural tourism industry that will see some of these cruise passengers on land excursions.

Keep in mind that disability accompanies aging. The Open Doors Organization recorded that about 50% more of the existing group of Americans traveled between their 2002 and 2005 studies - even though it the travel industry had not done anything to make it significantly easier to do so. That group of people with disabilities and the leisure to travel is about to expand as the huge post-WWII generation ages. This market is big and travelers will reward those who build welcoming environments to accommodate them. Take the example of the United States.
Example 2: North America

In the United States this global trend toward standardization on best practices by government, industry, and people with disabilities takes place on Alcatraz Island. Many people know this steep rocky island near from San Francisco from movies about its time as a maximum security prison. As the saying goes, "Break the rules and you go to prison. Break the prison rules and you go to Alcatraz."

Today the island is a National Park run by some of the most passionate supporters of disability rights in the US Park Service. Early in November I had the opportunity to inspect the island with the National Accessibility Center from Indiana University. The park is a model for the entire world and continuously hosts international park and government officials. The practices used at Alcatraz are further disseminated because one out of four visitors comes from outside the US and brings their experience home. The message of accessible tourism is not only coming from conference like our or ENAT in Europe or the one this May in Brazil. Every day people from Asia are seeing accessibility in action at Alcatraz.

Physical access for the mobility impaired was one of the first barriers to be addressed on the island. More than a decade ago National Park Rangers, including James Adams and Rich Weiderman, invented a tram system for the island that anticipated current trends calling for green and sustainable development in tourism. Using an electric motor designed for the tractors that pull jet airliners at airports they applied Universal Design principles to manufacture this uniquely powerful but non-polluting tram. It was estimated that it would serve 15,000 park visitors in its first year. Everyone was surprised to find that 30,000 used it. Today it averages 70,000 to 80,000 users annually. Keep in mind that about 25% of these users are people who bring the expectation of such accessible and eco-sensitive service back to their home park systems.

The island can only be reached by boat and only one company, Alcatraz Cruises, serves the island. Early in their contract the cruise line saw that they needed to invent a new type of dock and ramp system. Doing so made them the only cruise facility on the West Coast of the USA able to accommodate passengers 365 days a year in all extremes of weather and tides. I, for example, had no difficulty getting off the island the day 580,000 gallons of tanker fuel spilled in the Bay near the island and the park was systematically being shut down for the emergency. Standardizing on the dock design and evacuation practices perfected at Alcatraz National Park disseminates good physical design and safety policy. It also affirms a profitable collaboration between business and government where innovation to achieve accessibility resulted in better service for those with no disability.

Program accessibility, or accessibility to all the services and benefits offered by the park beyond simple physical access, is another area where Alcatraz first set the standard and then became the living university teaching by example.

Alcatraz was the first park to adopt audio walking tours narrated in the first person voices of rangers, former prisoners, and guards. The approach was so successful that the tiny recording company that produced the first tours became the largest in the world in that field and was just recently purchased by a television channel. Once again, accessibility proved to be profitable and trend-setting.
Example 3: Africa

The final example, Africa, represents something different.

One of Africa's most popular forms of tourism is the safari. It operates in isolated areas. That isolation means the safari industry has less structure for formalizing best practices. In this case, the significant current trend is the result of the vision of a European entrepreneur who, with a vision and his sturdy wheelchair, has just completed visits to over 130 hotels and tourism destinations throughout the continent. Gordon Rattray runs Able Travel. On his research tours he is able to spread standards through his individual consultations. Here neither government nor industry are in the lead. Leadership comes from within the disability community itself.

The end result of Gordon's accessibility audits throughout Africa will be a published tour guide, "African Safaris for People with Limited Mobility". In that way his work promotes adoption of standard practices much as US author Candy Harrington does through her magazine Emerging Horizons and her various books, "101 Accessible Vacations," "There is Room at the Inn," and "Barrier-Free Travels." Bruce Cameron has taken a similar approach to standards promotion through his book "Easy Access Australia" and frequently contributes to academic and policy work with Australian academics like Dr. Simon Darcy and Dr. Tanya Packer. Mary Chen in Malaysia will launch the disability lifestyle magazine, Challenges, in Malaysia in January where I will write on travel. I have been asked to edit a special issue on travel and disability for the academic journal, Review of Disability Studies published by the University of Hawaii. Dr. Sunil Bhatia has also invited academics to contribute articles specifically about Thailand to the journal of the Design for All Institute of India. I invite any of you here today who would like to submit an article or discuss an idea for an article to talk to me during the conference.
Summaries of examples

Gordon Rattray's work in Africa is a "profit-based approach to disability" where he establishes himself, a person with a disability, as the expert on an entire continent. As an individual consultant he brokers and disseminates standards in a region where only a sparse business and social network serves the accessible tourism market.

In contrast, the Inter-American Institute on Disability and Inclusive Development takes a "rights-based approach to disability." South America is a heavily networked environment that produced the important accessible tourism document in 2004 known as the Rio Charter: Universal Design for Sustainable and Inclusive Development. It is further linked by a flourishing route of cruise ship destinations sharing similar needs. The orientation to disability rights of the Institute emphasizes the experience of the organization's founder, Rosangela Berman-Bieler, who worked with Judy Heumann to establish the Disability & Development program of the World Bank. Both women are wheelchair users and professionals in international development.

In the United States with Alcatraz National Park we see yet another model. Here the key professionals working in the National Park System and the contracted cruise line do not have disabilities themselves. There has been a systemic adoption of disability rights values by this government agency and this business - although only through the sustained pressure of these professionals from within and sometimes with the addition of pressure such as lawsuits from without. Here professionals lacking disabilities guide the institutions through their own sense of justice, legal obligation, and business opportunity. As a prominent international tourism destination what they have created becomes a school of Accessible Tourism for any visitor who cares to learn from it.

Tourism ministries, and the industry they support, have begun to apply results from studies about our travel behavior and purchasing power. Facility construction and business practices based on Universal Design that were once considered innovations and were known only locally are now better known and adopted worldwide. There is increasing consensus on what are proper - and profitable - ways to attract us as a market. The fact that this conference takes place today through the generous sponsorship of the Thai government with support from the tourism industry is one world-class demonstration that thoughtful leadership has recognized the value of the full participation of all its citizens and how concrete action to include citizens with disabilities creates the environment of hospitality that attracts tourists from around the world.
Review

Let me end by speaking in sequence to the three groups that will make accessible tourism possible: governments, businesses, and the disability community.
Governments

Governments: When we promote a rights-based approach to disability we commit ourselves to a tradition that affirms the dignity and worth of every individual human being. We raise the individual beyond the context of the body and its functions or limits; beyond, family, race, or nationality. We state that we support the rule of law and hold our governments accountable for protecting the freedoms that we believe are due to all human beings. By promoting the UN Declaration on the Rights of Persons with Disabilities we are actually holding more than our own national government to this standard. We are claiming that all governments of all nations must unequivocally promote and protect the right to full social inclusion of all people with disabilities throughout their lifespan.

A rights-based approach to tourism claims that there must be equal opportunity of access for people with disabilities allowing them to enjoy the benefits of travel and hospitality whether for business or for leisure. That access must be physical as with the design and construction of buildings or transportation systems. That access must also be to the non-physical benefits available to travelers without disabilities. This could be as simple as receiving the same respect offered to other customers during a transaction. It could be as complex as comprehensively planning safety and evacuation procedures appropriate to people with various sensory, intellectual, and mobility capacities.
Business

Businesses: When we promote a profit-based approach to disability we acknowledge that a business must pay attention to its profitability - once it has met the minimum standards set by law and by best practices. We expect to see variation between the products offered by different businesses. We expect to see accessible tourism products both inexpensive and extravagant because our community includes members who can afford both. In fact, we count on businesses to take the lead in innovation. We trust them to do their work so well that, like moths to flame, we will want to experience the products that they have developed to entice us. So let me offer to the industry this cheeky invitation from Jesús Hernández, accessibility director of Spain's ONCE Foundation, first in its original Spanish:

"No te preocupes de mis derechos, preocúpate de mi cartera"! [Spanish]

"Don't overly concern yourself about my rights, pay attention to my wallet!"

Businesses do what you do well! We want to spend our money! Studies show that people with disabilities have that legendary trio of characteristics that all travel agents look for: the desire to travel, the means, to travel, and the freedom to travel.

In fact, the study I quoted earlier from the Open Doors Organization predicted that those billions of dollars spent on travel by Americans with disabilities could easily double with the creation of appropriate travel products. Now that's a bold prediction!
People with disability

People with Disabilities: When we travel we represent more than ourselves because we are part of a community. As a person with a disability you carry two items of unusual value - especially in combination. Both tend to surprise those you meet as you travel. The two items are money and pride. By money I mean more than the change in your pocket. By pride I mean that confident self-determination of knowing who you are beyond any economic measures of worth.

The very fact that you have a disability and travel suggests something about your economic condition. It indicates that you have credit, savings, education, maybe a profession that requires travel. It demonstrates more importantly that you have the ability to make decisions about the course of your life for yourself. That combination of means and dignity are potent tools of social transformation.

Travel the world today and you will find that there is a hunger for community and solidarity among people with disabilities. As an exchange student, backpacker, business or vacation traveler, your identity as a person with a disability gives you access to faces of the tourism industry that others may not have. Some are positive. Some need improvement.

The next two years will be a surprise to those in the industry who have not yet prepared their profit-based approach to disability. Some will be asking you to help. You have an opportunity to contribute and to shape the travel industry. That may be with the rights-based emphasis through government, education, or policy. It may on the profit-based side through invention, construction, marketing, or business creation.

Whatever opportunity you choose, take your pride - and your money - on the road. Travel. Teach the industry and level the path for the ones who come after you!
Post conference update

30 November 2007

Now that the United Nations' (UNESCAP) development document Biwako Plus Five makes Inclusive Tourism an explicit goal in the ASEAN region I am co-authoring a UN handbook on barrier-free environments addressed to the tourism industry.

The Inclusive Tourism Conference, ICAT 2009, will be held in Singapore April 2009. Planning is underway and I will again keynote. ICAT 2011 is scheduled for Australia.

UNESCAP will hold a complementary Inclusive Tourism conference in Takayama, Japan (date being determined this week.) Takayama has particular international significance as a destination that has successfully integrated the preservation of culture, heritage and tourism for seniors with Universal Design. This event marks a significant synergy for the industry between senior and disabled niche markets.

In a sign of market maturity the assistive technology research Start Centre of Singapore will be a full partner in ICAT 2009 providing the conference's first product show and launching an entrepreneurial emphasis.

The Start Centre will also hold its i-CREATe 2008 conference in Bangkok in May 2008. The event is sponsored by the sister of Thailand's king reflecting the royal family's growing experience with disability. I will chair a panel and co-present a paper on Inclusive Heritage Tourism in the Greater Mekong Region.

As all this is being planned word came in the the Rolling Rains Report is listed as 78th in popularity on the list-of-travel-blogs the T-List. While this is personally flattering the significance of this relatively high ranking is that the blog is a *niche* publication written intentionally to serve an overlooked set of customers. This attention by the broader industry in writing on our niche is a positive sign!
About the author

Scott Rains, D. Min. writes daily on travel and issues of interest to people with disabilities occurring in the tourism industry at Rolling Rains

His research on the topic of Universal Design and the travel and hospitality industry has included appointment as Resident Scholar at the Center for Cultural Studies of the University of California Santa Cruz (2004-05). He consultants globally on accessible travel and hospitality.

Scot can be reached at srains@oco.net

The recently launched Access to Premises Campaign Kit is a great accesss resource that addresses the issues of up to 4 Million Australians who are unable to access their own communities. Its aim is to help people with disability gain more power and control in their lives by helping them to assert their rights and to share their stories within the community in which they live.

The Kit is also available in Easy English and provides information and tools to people with a disability that will help them speak out about the lack of access to businesses and services that they face in their local communities, including information about how to run a targetted campaign, the different phases of information gathering, educating the community and lobbying government.

"The secret to running a community based campaign is to make the issues as local and as personal as possible. You need to have up-to-date information about access in your local community. You need to let members of your local community know how being able to access local businesses is going to affect people with disability and others both personally and professionally. You then need to get this information to the people in power so they can make the changes that are needed."

AFDO (Australian Federation of Disability Organisations)

The Access to Premises Campaign Kit has been prepared for the Australian Federation of Disability Organisations (AFDO). AFDO is the peak national body for organisations of people with disability.

To download a copy of the Access to Premises Campaign Kit or for further information about AFDO visit the Australian Federation of Disability Organisations website.

The Human Rights and Equal Opportunity Commission has received an application from Regional express airlines (Rex) requesting exemption from sections 23 and 24 of the Disability Discrimination Act so far as to permit Rex placing certain restrictions and requirements on the carriage of passengers with specific disabilities on its SAAB aircraft.

Rex argue that these restrictions are justified and in doing so have clarified passengers who will need companions to travel. This is open for comment until 5 December 2007.

More information about the restrictions proposed by Rex is available on the HREOC website.

October 2007

The DAISY Consortium and IFLA LBS are working on projects to make a range of material accessible to the global print disability community.

A number of projects are underway to assist in the formation of a Global Library include:

* Federated Search across content held by participating libraries
* Communication and Collaboration with publishers
* Digital Rights Management
* International Legal Framework
* Shared Collection Development
* Standard Interface for the CNIB e-delivery system
* Integration with mainstream libraries

With this also impacting the Australasian environment the Round Table on Information Access for People with Print Disabilities wholly supports the vision and developement of a Global Library and the work of the DAISY Consortium and IFLA.
Copyright Amendment Bill 2006

A draft version of the proposed amendments to the Copyright Act was released in October 2006 for comment. This followed extensive representations to the copyright department of the Attorney Generals department by RTIAPD, VA and BCA. The amendments are viewed as being a significant shift towards increasing access to published information for people with a print disability. The proposed changes incorporate the addition of the Bern convention 3 step test. This in effect means it is not an infringement of copyright to make a copy of a publication as long as it is a special case, does not interfere with the rights of the author to benefit from their work or that the copying does not unduly prejudice the intellectual property of the owner. These provisions will pave the way for individuals and organisations to make copies for print disabled people as long as there is no accessible copy available. Additionally the technological circumvention provisions protect the rights of people with print disability to use technology to access information. Additions of format and time shifting provisions will also help individuals with a print disability. If these proposed provisions are passed into law they will represent a significant improvement for the print disability community. The Round Table on Information Access for People with Print Disabilities has played a major leadership role in attaining these changes.
Update on copyright amendments - September 2007

We believe that the Copyright Amendment Bill 2006 works to put into law important new exceptions in line with the Round Table submission in relation to new personal use exceptions and for institutions helping people with print disabilities:

* The "personal use" exceptions ensure that members of our community can "format shift" to make accessible copies for private use and
* Can with other sectors of the community "time-shift" - recording TV and radio programs, and
* Can "space-shift" recording from a CD to play on your CD players without fear of breaching copyright

The Copyright Amendment Bill 2006 addressed our submission and greatly reduced the restrictions that the preceding copyright law placed on Round Table member organisations making copies without needing prior permissions:

* The legislation establishes an exception to infringement for people with a disability individuals and individuals assisting them under certain conditions without prior approval and confirms our ability to communicate works in accessible formats. It should be noted that this provision is broad in scope as it does not refer to particular disabilities.
* The legislation establishes an exception to infringement for organizations assisting people with a print disability to reproduce copies under certain conditions without prior approval and confirms our ability to communicate works in accessible formats. The legislation also allows the creation of masters from which copies can be made for individuals. It should be noted that a remuneration notice is still required.
* The amendment is not format-specific. This allows our organisations and our clients to fully utilise the many and varied technological advances that are being made in the fields of media, information delivery and accessibility.
* Finally, the amendment has broadened the definition of a perceptual disability to more accurately reflect the needs and circumstances of the community.

The amendment provides guidance in the form of specific requirements to be recognised as a "special case" under the three step test utilised by Section 92 of the Berne Convention.

* Specific uses of copyright material by our organisations do not conflict with normal exploitation of the work, as reproductions produced are for a "closed market", and are circulated on a non-profit basis;
* Uses do not restrict a copyright holder from producing a similar version for the open market for their own commercial benefit.
* The uses of copyright material by an organisation do not unreasonably prejudice the legitimate interests of the copyright holder, as all reproductions in all formats produced by an organization contain a full and complete acknowledgement of the author, publisher and or/copyright holder of the original work.

The legislation particularly the "special exceptions" provision enables individual with print disabilities and organizations assisting them to take action to address information access needs in a more supportive legislative framework. But with that comes responsibility.

Whether or not circumstances "amount to a special case" or use "conflicts with a normal exploitation off a work or "prejudices" the legitimate concerns of a copy right owner are open for interpretation by the courts. Any owner of copyright materials may take action in the courts where they believe there rights have been damaged. So take the tests seriously. You will need to take steps to change processes and policies in your organizations to establish that you have acted within the law. If in doubt we strongly recommend you seek legal advice.

* More than ever before we must continue to work closely with Publishers to ensure that the rights of authors and writers are considered.
* More than every before we must continue to work with the Copyright Agency Limited to ensure that we register our transformation of works and contribute to the database that alerts others of a accessible copy of a work.
* More than ever before we must work with the Australian Copyright Council and the Attorney General office to ensure that we weight our decisions with the opinion of such bodies.