Travel & Disability Address to the Carlo Besta Institute
Participant/Observer Notes on the Global Paradigm Shift Toward
Neurology in the Third Millennium:
From disability to social reinsertion
April 17, 2009
We are asking new questions for a new era - the Third Millennium: “Is tourism an
effective intervention? Can it move a patient from disability to social reinsertion? If so,
what are the protocols for those who practice neurology? What is our action agenda and
how do we measure change?”
Apparently, it is appropriate intervention. At least my neurologist thought so. He was the
chairman of the Neurology Department of the Medical School at the University of
Washington Hospital where I did my rehabilitation. That was way back in the Second
Millennium. He advocated for me to study at the University of Sao Paulo in Brazil. Here I
am rehabilitated, reinserted, and ready to be examined as a case study.
I am not a neurologist, or a rehabilitation medicine specialist or a medical researcher of
any kind. I tend to experience those professions at the other end of a scalpel, or a rubber
hammer, or a microscope.
So we come to the first revelation about my methodology. I speak as a participant-
We would answer our questions in a rehabilitation medicine or a public health argument.
Fortunately Dr Leonardi has skillfully begun that process this morning by grounding the
World Health Organization (WHO) International Classification of Functioning, Disability
and Health (ICF) definition of disability. In that framework disability is an interaction
between function and environment. That is, by definition we have moved from treating a
single nervous system to impacting the collective social nervous system. We have
adopted a broad enough definition of who the patient is to know that the treatment
protocol requires effective social intervention.
So we come to the second revelation about my methodology. I contextualize in
My academic preparation is in theology. It is a world of parables, poems, reflection on
inner experience, and values-based social engagement -- as well as close readings of
texts. Therefore I propose metaphor to organize the answer I have learned to our
questions. I will use the metaphor of sailing.
On my trip here to Milan I am being assisted by one of the world’s experts on accessible
yachting, Ms. Sherri Backstrom of Waypoint Yacht Charter Services. [Sherri, dove sta?]
From her I am learning about sailing. Waypoints, for example, are selected points along
the route that indicate that you are proceeding correctly. I’ll navigate through three
1. Why do we travel?
2. How do we travel?
3. Where do we travel?
First, let me identify the passengers who are sailing together as I see them represented
as speakers on the schedule of this conference:
1. Medical professionals
2. Those of us experiencing disabilities
3. Business stakeholders in the travel & hospitality industry
4. Policy makers and government leaders
From each set of passengers we can draw recommendations on how to chart a research
plan, an action agenda, and which waypoints to benchmark for measuring change.
Each set of passengers is listening for something slightly different:
Our medical passengers want to have data to satisfy the requirements of
Our passengers with disabilities want data that assures them of the physical
accessibility of transportation, lodging, and entertainment and, equally important,
they want cultural inclusivity as well.
Our business stakeholders want data that allows them to predict initial
investment and sustainability through financial profitability.
Our business and policy experts want to know what best practices already exist
around the world and how to best implement them in new locations
I. Why do we travel?
A preliminary study by Dr Shu Cole is underway on the motivations for travel among
people with disabilities. She reports:
In the limited literature on travel for people with disabilities, some have
demonstrated that people with disabilities have the same desires and motivations
for travel (Baker, 2005). Others have suggested that travel has special meanings
to travelers with disabilities. For example, Yau et al. (2004) concluded in their
study with 52 travelers with a disability that “being able to travel is a meaningful
task through which a person with a disability can demonstrate to others that they
have recovered or started to regain their control over destiny and to assert their
future quality of life” (p.958).
Just prior to Dr Shu’s first focus group Dr Simon Darcy circulated the paper, “Accessible
Tourism: Understanding an Evolving Element in Australian Tourism.” In the conclusion of
his study of the Australian situation he notes:
This scoping project has broken new ground in accessible tourism through
accessible destination experience development.
Where previous work on accessibility has focused on individual enablers -
transport, accommodation, attractions, way-finding and industry attitudes to
disability—this research project has gone to the essence of why people travel to
destinations in the first place:
To experience the ‘sense of place’.
Whether people have access requirements or not they should be able to have
the same ‘sense of place’ as anyone else travelling to an area. Yet, no research
has focused on this aspect of accessible tourism.
A “sense of place” is most effectively communicated and experienced by insertion:
swimming in the Ganges, eating at a superb restaurant, responding to the rhythms of
language, look, and music that are endemic to a place.
As travel and leisure studies researchers enthusiastically examine questions of why
anyone travels they find that the desire for insertion – even if temporary – into “place” is
a motivation n spite of barriers.
Researcher Laurel Van Horn quotes the Open Doors Organization study of the US travel
market and writes,
The vast majority of air travelers [with disabilities] (84%) stated that they
“encounter obstacles when dealing with airlines” (ODO 2005, p.12).
(Source: Van Horn, Disability Travel in the United States: Recent Research and
and the 2002 U.S. Department of Transportation Bureau of Transportation Statistics
Freedom to Travel report says:
A significantly higher percentage of air travelers with disabilities experience
problems at airports than do their non-disabled counterparts, 55% versus 45%.
(Source US DOT BTS, Freedom to Travel, 2002)
Returning to Dr Shu’s pilot study we see she asked the following questions:
1. Why are people with mobility impairments passionate about leisure travel
knowing the potential barriers they would encounter during travel?
2. What is the role of leisure travel in the lives of people with mobility
3. Has leisure travel impacted their quality of life? If yes, how?
We are still awaiting analysis of the data gathered by Dr Shu. She tells me that she is
actively seeking sponsorship to mount a full study of these questions. Dr Graziella
Filippini here at Instituto Carlo Besta has indicated interest for collaboration with her.
Perhaps there are others is room interested in this topic. [Dr Shu, where are you?]
As anecdotal evidence, I note that my motivations for travel have changed over time.
My first travel, after paralysis, was in response to an invitation. My friends asked me to
join them at a concert while I was still in the hospital. This trip was soon followed by a
week of camping with them to attend an outdoor Shakespearean festival.
The invitation to travel to the concert evoked a strong urge “to regain control over [my]
destiny.” It broke a depression and effected my release from the hospitalization after
being there for four months.
Later, travel became simply a task demanded by my professional life. More recently it
has resumed a high degree of meaningfulness. As a consultant on travel by those with
disabilities, I use the experience of travel as a laboratory for observation and a means to
educate, even workers on the job as I interact with them while traveling, about best
practices that guarantee the quality of life of others in the disability community.
As we chart a global research and action agenda on inclusion in tourism let us
begin now to benchmark why we travel. Let us document:
• Reasons for travel reported by people experiencing disabilities
• Attitudes about travel by people experiencing disabilities studying travelers both
outbound (while home in their own countries) and inbound (while at their
• Reasons for not traveling reported by people experiencing disabilities
• Destination-specific reasons for travel
II. How do we travel?
Research on the travel behavior of people with disabilities is often guarded as propriety
business intelligence by industries that have been successful retaining travelers with
disabilities. These include passenger cruise lines and hotel chains. At the other extreme
research is lacking on the part of travel destination nations regarding the number and
characteristics of visitors with disabilities.
However we do have some trustworthy data from Australia on how people experience
disability through travel. An eight point summary appears in a section debunking myths
in the foundational study From Anxiety to Access. I recommend the study as
foundational reading for this field but I want to isolate one specific observation:
On average 80-90% of all [ ] travel by people with a physical disability is
with a partner/carer, family or friends who do not have a disability. Of those who
undertook travel with other people with a disability most travelled with 1-2 other
people with a disability.
(Darcy, Anxiety to Access, 2000)
In fact, this is a potentially lucrative market even when the one of more companions are
not counted. Fr example, the 2003 study by the Open Doors Organization on the
American market of PwD as a travel segment demonstrated that in 2002, American with
…made 32 million trips and spent 4.2 billion dollars on hotels, 3.3 billion on
airline tickets, 2.7 billion on food and beverages, and 3.4 billion on trade,
transportation, and other activities.
Rosangela Berman-Bieler, director of the Brazil-based Instituto Interamericano sobre
Deficiência e Desenvolvimento Inclusivo ( the Inter-American Institute on Disability and
Inclusive Development ), writes:
In the United Kingdom, the Employers’ Forum on Disability estimated 10 million
adults with disabilities or reduced mobility in the UK, with an annual purchasing
power of 80 billion pounds sterling. The Canadian Conference Board reported
that in 2001, the combined annual disposable income of economically active
Canadians with disabilities or reduced mobility was 25 billion Canadian dollars.
(Rosangela Berman-Bieler,Tourism for All Network :Responsible, Sustainable,
and Inclusive Development in Tourist Destinations, 2006)
In Australia in 2003-04, it is estimated that tourists experiencing disabilities:
• Spent between $8034.68 million and $11980.272 million
• Contributed between $ 3075.5243 million and $4580.219 million to Tourism
Gross Value Added (12.27% - 15.60 % of total tourism GVA)
• Contributed between $ 3885.168 million and $5787.435 million to Tourism Gross
Domestic Product (11.02% - 16.41% of total)
• Sustained between 51,820 and 77,495 direct jobs in the tourism industry (11.6%-
17.3% of direct tourism employment)
(Source Darcy: Accessible Tourism, 2008)
If disability is an interactive process between degree of function and environment then
studies may show that the type of functional impairment correlates to preferences for
certain modes of transportation. Similarly improvements in the design and quality of
tourism infrastructure and services ought to result in increased travel by people who
This hypothesis seems consistent with results reported by van Horn:
A significantly higher percentage of air travelers with disabilities
experience problems at airports than do their non-disabled counterparts, 55%
versus 45%. The most frequently cited problems for both groups are schedules
not being kept and restrictive security measures.
However, these general issues were mentioned less often by travelers
with disabilities than by the non-disabled. One in four travelers with disabilities
(25.39%) complained of schedules not being kept compared to more than one in
three (37.66%) travelers with no disability. Restrictive security measures
bothered one in three (34.12%) travelers with disabilities versus almost one in
two (49.13) travelers with no disability (BTS 2003, p.9).
Instead, those with disabilities complained more often of staff assistance/
poor sensitivity, inadequate seating, too much walking and unavailable
wheelchairs. More travelers with disabilities also experienced problems on
airplanes, 32.91% versus 23.61% of those without disabilities. In each case, the
biggest grievance was inadequate seating—68.61% among complainants with
disabilities, 52.44% among those without (BTS 2003, p.36-37).
(Source: Van Horn, Disability Travel in the United States: Recent Research and
Already we have located at least one cluster of differentiators in travel experience.
Recall the optic of disability defined as function in relation to context. 52.44% of air
travelers not normally identified as disabled found the environment disabling. It is the
context of improper design of place, product, and policy that disables those who travel –
even those who in their familiar contexts would not identify themselves as a person with
Anecdotally, a South African advocate of Inclusive Tourism told me of attending a
conference. It was on the recent barrier-removal and Universal Design enhancements
made to the UK’s rail system. A study found that only 20% of the changes could be
legitimately said to exclusively assist those traditionally identified as having a disability.
That is, the travel experience of all passengers was improved by 80% of the changes
made for PwD.
One of Dr Shu’s questions on why we travel in spite of known obstacles touches on a
topic that should be of extremely high interest to those in the industry. Quoting the 2002
Open Doors Organization Study:
Air travelers say they would take 2 more flights per year if airlines were to
accommodate their needs as a person with a disability. This translates into 18.8
million more flights and means that air spending by the disability community
could more than double [ from the current $13.6 billion annually] if airlines were
to make necessary accommodations.
The top features or services that airlines would need to offer to encourage
more frequent travel would be:
1) more accommodating staff,
2) guaranteed preferred seating, and
3) a designated employee at check-in and arrival
(ODO 2002, p.10).
(Source: Van Horn, Disability Travel in the United States: Recent Research and
As we prepare to implement a global research agenda on inclusion in tourism let
us begin now to benchmark how we travel. Let us document:
• Market value of a nation’s PwD population as potential travelers
• Actual travel behavior of a nation’s PwD
• Changes in utilization of modes of transportation following design changes with
users broken down by types of disability.
• Degree of utilization by non-disabled users of design changes done for PwD.
• Patterns in travel companionship by PwD in relation to design or policy changes.
III. Where do we travel?
I order of popularity the most often visited international destinations for Americans with
4) the Caribbean
At this level of analysis the travel behavior of persons experiencing disability does not
differ from the general US population.
However, it is relevant to note that no tourist destination has ever mounted a marketing
or advertising campaign aimed specifically at the disability market. This failure by the
industry to act in its own economic self-interest is especially perplexing in light of the
success of a disability community organized event called the Deaf Cruise.
Deaf Cruise 2007 chartered an entire Royal Caribbean Cruise Line mega ship with
more than 3,800 deaf passengers for one week. Several smaller cruises for the deaf
community occur each year. Serving travelers with disabilities is good business.
Once again it is in spite of obstacles that we travel.
This next example illustrates a constriction at the very source of the travel economy – a
failure to provide the information necessary to make the decision to travel. Early in 2008:
New research by accessibility experts Fortune Cookie, commissioned by travel
magazine Travolution, found that many of the U.K.’s top travel firms have not
optimized their websites for disabled users, despite laws in place (1995 Disability
Discrimination Act) that require disabled people receive the same level of service
that other customers expect.
All of the eight popular British travel websites included in Travolution’s research
failed to meet basic accessibility criteria, meaning all would be difficult for a
disabled person to use.
I often tell clients, “All travel is adventure travel when you are someone who experiences
a disability.” The disorientation of navigating through a culture that is foreign to you is as
close as your computer screen as soon as you begin to contemplate travel.
As we prepare to implement a global research agenda on inclusion in tourism let
us begin now to benchmark where we travel. Let us document:
• Statistics on the number and source of travelers with disabilities in tourist
• Availability of trustworthy destination information on topics necessary to travelers
• Availability of such information in formats accessible to those with various
• Geographic and cultural variables affecting attitudes toward service for travelers
who experience disability
• Standardization of building codes and transportation policies around international
• Ability to secure necessary medical or rehabilitative care or equipment,
carers/attendants, transport of personal medical equipment, medicines, or
accommodate assistance animals during travel
• Establishment of disabled-accessible booking systems that guarantee access to
accessible transport, lodging, and entertainment
In preparing for this presentation I found an article referring to research on public health
policy with this provocative title, “We're not short of people telling us what the problems
are. We're short of people telling us what to doquot;: An appraisal of public policy and mental
Taking this as my cue let me summarize my conclusion very simply.
IV. There is only one practical solution – Universal Design
If we do not apply a design solution to the problems encountered by travelers - with or
without disabilities - we treat only symptoms rather than causes. Design is the
therapeutic intervention. We are observing a system aberration that reinforces itself.
Universal Design intervenes to disrupt that system.
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.
Universal Design is also called Inclusive Design, Design-for-All and Lifespan
Design. It is not a design style but an orientation to any design process that starts
with a responsibility to the experience of the user.
(Source: Institute for Human-centered Design
In various parts of the world we have come to use the term “Inclusive Tourism .”
Inclusive Tourism is defined as the application of Universal Design by the tourism
industry to its products at every phase of their lifespan from conceptualization to
retirement and replacement.
The application of the seven principles of Universal Design to the development,
marketing, and management of destinations is referred to as Inclusive Destination
Development. The concept has been extended to coastal and maritime environments
through the Waypoint Backstrom Principles of inclusive maritime design.
As a result of our conference the Instituto Carlo Besta will produce a practical tool for
travelers with disabilities. Drs Donatella Bonaiuti, and Graziella Filippini togther with
Paolo Cornelio have set out to create a checklist to direct people with neurologically-
based disabilities through the process of making well-informed travel decisions. I
suspect that be further insight into the characteristics of good travel experience for those
who are not yet disabled will also be a consequence of this work.
As I prepared my comments to you I asked my peers in the field known as Disability
Studies to critique me. They are an intellectually formidable crowd. They tend not to be
shy about critiques. In fact, the core insight of disability studies is that disability is a
socially constructed reality and thus vulnerable to sustained critique.
From them let me leave us with the seven principles of Universal Design as a mental
tool. The principles serve as a framework for evaluating our efforts. Whether applied
literally or metaphorically these principles arise from a consensus on political and
practical goals within disability culture. They are seven waypoints in the design of a new
global paradigm achieving inclusion in tourism:
1. Equitable Use: The design does not disadvantage or stigmatize any group of
2. Flexibility in Use: The design accommodates a wide range of individual
preferences and abilities.
3. Simple, Intuitive Use: Use of the design is easy to understand, regardless of the
user's experience, knowledge, language skills, or current concentration level.
4. Perceptible Information: The design communicates necessary information
effectively to the user, regardless of ambient conditions or the user's sensory
5. Tolerance for Error: The design minimizes hazards and the adverse
consequences of accidental or unintended actions.
6. Low Physical Effort: The design can be used efficiently and comfortably, and
with a minimum of fatigue.
7. Size and Space for Approach & Use: Appropriate size and space is provided
for approach, reach, manipulation, and use, regardless of the user's body size,
posture, or mobility.
I said that my disability studies colleagues are an intellectually serious group. They also
have their comedians.
After reading this presentation one asked me, “So Scott, does this mean that my
neurologist will start writing me prescriptions for a vacation?”
I told her I’d volunteer for clinical trials if anyone here today wanted to do set that up:
multiple doses of Paris, Andalucia, Morocco, Buenos Aires…
As a consultant on inclusion in tourism I do make “house calls” on all seven continents.
- 30 –
Dr Scott Rains
Dr. Scott Rains writes daily on travel and issues in the tourism industry of interest to people with
disabilities. His work appears online at www.RollingRains.com and
http://withtv.typepad.com/weblog/travel/ . He is the founder of the global forum on Inclusive
Tourism – Tour Watch. Rains’ articles have also appeared in New Mobility, Emerging Horizons,
Venture, Brave New Traveler, Challenges, TravelBiz Monitor, Enabled Online, Contours,
Accessible Portugal, Audacity, Travel and Transitions, eTur Brazil, Success & Ability, Turismo
Polibea, [with]TV, and Disaboom among others.
For his research on the topic of Universal Design and the travel and hospitality industry he was
appointed as Resident Scholar at the Center for Cultural Studies of the University of California
Santa Cruz (2004-05). Rains has been retained as a consultant on Inclusive Tourism traveling as
Visiting Journalist at the invitation of India, Australia, and South Africa. He is a lifetime
Honorary Member of the European Network for Accessible Tourism (ENAT).
He is active as a consultant and speaker. Select presentations include:
• Address to the Carlo Besta National Neurological Institute at Neurology in the Third
Millennium: From disability to social reinsertion conference
• Presentations during January – February 2009 consultation throughout South Africa on
Inclusive Tourism in anticipation of 2010 FIFA World Cup
• Four full-day workshops on the disabled traveler market for travel professionals in India
(New Delhi, Mumbai, Kochi, Chennai); accessibility consultations with Kerala tourist
destinations; capacity-building sessions with Indian disabled peoples’ organizations
• Opening keynote address at the second International Accessible Tourism Conference at
the United Nations in Bangkok Thailand (2007)
• Pre-conference workshop on travel and Universal Design at the Adaptive Environments
Conference in Rio de Janeiro, Brazil (2005),
• Opening keynote address at the first International Accessible Tourism Conference in
Taipei, Taiwan (2005)
• Plenary presentation at the NICAN conference on Easy Travel in Perth, Australia (2004)
His 2009 schedule includes invitations to address the third International Accessible Tourism
Conference in Singapore, the first conference on neuromedicine, disability and tourism in Milan
and the third i-CREATE conference sponsored by the Princess of Thailand in Singapore.
He was co-convener of the second International Accessible Tourism Conference hosted by the
United Nations November 2007 in Bangkok, Thailand and was consultant for the September
2007 World Assembly on the U. N. Convention, on the Rights of Persons with Disabilities in
Seoul, South Korea. He is Resource Person for UNESCAP on the topic of inclusion in tourism.
Rains’ scholarly work includes editorship of the first body of research on travel and disability in
the field of Disability Studies with the publication of the 2006 (Vol. 2 Issue 2) of the Review of
Disability Studies. He has been invited to edit a follow-up volume after contributing to the
Disability Studies Quarterly (March 2007). He edited a special issue of the journal Design for All
India on advances in Universal Design in Thailand. He is a regular contributor to the latter
journal. Dr. Rains is currently editing an anthology on Inclusive Tourism in Spanish and
Portuguese for the Turismo para Todos Network of the Inter-American Institute on Disability and
Inclusive Development and chapters on Inclusive Tourism and Universal Design respectively for
He consults with travel agents and tour operators worldwide. Dr. Rains is currently working with
a three-nation accessible tourism consortium (Turismo para Todos) in South America, a
consortium involving a municipality and several universities in Thailand, and serves as Producer
of tourism programming for the start-up tv channel [with]TV. His daily column is the Rolling
Rains Report on Travel, Disability & Universal Design at www.RollingRains.com.