A presentation by Dr Scott Rains from the Inclusive Tourism conference of the Istituto Carlo Besta

2. Scott Paul Rains
Publisher of Rolling Rains Report
Inclusive Tourism – Participant/Observer
Notes on the Global Paradigm Shift Toward Solutions
W e are asking new questions for a new era: “Is On my trip here to Milan I am being assisted by one
tourism an appropriate intervention for moving a patient of the world’s experts on accessible yachting, Ms Sherri
from disability to social reinsertion as we practice neurol- Backstrom of Waypoint Yacht Charter Services. From her
ogy in the Third Millennium? If so, what are the proto- I am learning about sailing. Waypoints, for example, are
cols?”. I am not a neurologist, or a rehabilitation medi- selected points along the route that indicate that you are
cine specialist or a medical researcher of any kind. I tend proceeding correctly.
to experience those professions at the other end of a At the end of each section I will identify some “way-
scalpel, or a rubber hammer, or a microscope. So we points” on the journey toward full inclusion of people
come to the first revelation about my methodology. I with disabilities in travel.
speak as a participant-observer. At this conference I see two of the three necessary
If I had the intellectual preparation I would organize passengers on board, on the agenda, and speaking:
my answer to our questions solidly within a rehabilitation medical professionals and those of us with disabilities. I
medicine or ideally a public health argument. Fortunately want to pick up one more set of passengers: business
Dr. Leonardi has skillfully begun that process this morn- stakeholders in the tourism industry. From each set of
ing by grounding the definition of disability in the WHO passengers we can draw recommendations on how to
ICF understanding that disability is an interaction chart a research and action agenda and which waypoints
between function and environment. This assures that we to benchmark for measuring change.
adopt a broad enough definition of who the patient is to A review of the literature tells us which way the wind is
know that the treatment protocol requires effective social blowing. Each set of passengers is listening for some-
intervention. That is, by definition we have moved from thing slightly different, Ok, andiamo. Buon vento naviga-
treating a single nervous system to impacting the collec- tores!
tive social nervous system. Our medical passengers want to have data to satisfy
So we come to the second revelation about my the requirements of evidence based practice. Our busi-
methodology. I contextualize in metaphors. ness stakeholders want data that allows them to predict
My academic preparation is in theology. It is a world of sustainability through financial profitability. Our passen-
parables, poems, reflection on inner experience, and val- gers with disabilities want data that assures them not
ues-based social engagement as well as close readings of only of the physical accessibility of the means of trans-
texts. Therefore I propose metaphor to organize my port, lodging, and entertainment but of its cultural inclu-
answer to our questions. I will use the metaphor of sailing. sivity as well.
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3. Extracts from the Proceedings of the International Conference
Three simple questions hold answers relevant to each Researcher Laurel Van Horn quotes the Open Doors
of our three constituencies: * Organization study of the US travel market,
1. Why do we travel?
2. How do we travel? The vast majority of air travelers [with disabilities] (84%)
3. Where do we travel? stated that they “encounter obstacles when dealing
with airlines” (ODO 2005, p.12).
I. WHY DO WE TRAVEL? (Source: Van Horn, Disability Travel in the United States: Recent
A preliminary study by Dr. Shu Cole is underway inter- Research and Findings, 2007)
rogating the motivations for travel among people with
disabilities. She reports: and the 2002 U.S. Department of Transportation Bureau
of Transportation Statistics Freedom to Travel report:
In the limited literature on travel for people with dis-
abilities, some have demonstrated that people with A significantly higher percentage of air travelers with
disabilities have the same desires and motivations for disabilities experience problems at airports than do
travel (Baker, 2005). Others have suggested that trav- their non-disabled counterparts, 55% versus 45%.
el has special meanings to travelers with disabilities. (Source: US DOT BTS, Freedom to Travel, 2002)
For example, Yau et al. (2004) concluded in their study
with 52 travelers with a disability that “being able to Dr. Shu’s pilot study is informed by this research and
travel is a meaningful task through which a person with explores the following questions:
a disability can demonstrate to others that they have
recovered or started to regain their control over des- 1. Why are people with mobility impairments passion-
tiny and to assert their future quality of life” ate about leisure travel knowing the potential barri-
(p. 958). ers they would encounter during travel?
2. What is the role of leisure travel in the lives of people
Just prior to Dr. Shu’s first focus group Dr. Simon Darcy with mobility impairments?
circulated the paper, “Accessible Tourism: Understanding 3. Has leisure travel impacted their quality of life? If yes,
an Evolving Element in Australian Tourism.” In the conclu- how?
sion he notes:
This new trend toward study of the motivation for trav-
This scoping project has broken new ground in accessi- el on the part of persons with disabilities can be applied
ble tourism through accessible destination experience by researchers in rehabilitation medicine and public
development. health policy. We are still awaiting analysis of the data
Where previous work on accessibility has focused on gathered by Dr. Shu from her focus groups. Dr. Shu tells
individual enablers – transport, accommodation, attrac- me she is actively seeking sponsorship to mount a full
tions, way-finding and industry attitudes to disability – study of these questions. Perhaps there is room for collab-
this research project has gone to the essence of why oration on this topic.
people travel to destinations in the first place: To expe- As anecdotal evidence I note that my motivations for
rience the ‘sense of place’. Whether people have access travel have changed over time. My first travel after paraly-
requirements or not they should be able to have the sis was in response to an invitation. My friends asked me to
same ‘sense of place’ as anyone else travelling to an join them at a concert while I was still in the hospital. This
area. Yet, no research has focused on this aspect of trip was soon followed by a week of camping with them to
accessible tourism. attend the Shakespearean theater in Ashland Oregon.
* As a side note I encourage those interested in shaping further research to examine the work done in Australia by Dr. Simon Darcy. He conducted a nationwide
study to determine that country’s research agenda on Inclusive Tourism. You will find that Instituto Carlo Besta has extended -- introduced the medical commu-
nity into the dialogue.
26

4. NEUROLOGY OF THE THIRD MILLENNIUM
The invitation to travel to the concert evoked a strong made 32 million trips and spent 4.2 billion dollars on
urge “to regain control over [my] destiny.” It broke a hotels, 3.3 billion on airline tickets, 2.7 billion on food
depression and effected my release after 4 months’ hos- and beverages, and 3.4 billion on trade, transportation,
pitalization. and other activities.
Later travel became simply a task demanded by my (ODO 2003)
professional life. More recently it has resumed a high In the United Kingdom, the Employers’ Forum on
degree of meaningfulness. As a consultant on travel by Disability estimated 10 million adults with disabilities or
those with disabilities, I use the experience of travel as a reduced mobility in the UK, with an annual purchasing
laboratory for observation and a means to educate on power of 80 billion pounds sterling. The Canadian
best practices that guarantee the quality of life of others Conference Board reported that in 2001, the combined
in the disability community. annual disposable income of economically active
Canadians with disabilities or reduced mobility was 25
As we chart a global research agenda on inclusion in billion Canadian dollars.
tourism can we begin now to benchmark why we trav- (Rosangela Berman-Bieler,Tourism for All Network: Responsible,
el? Sustainable, and Inclusive Development in Tourist Destinations, 2006)
• Reasons for travel reported by PwD
• Attitudes about travel by PwD measured both as out- In Australia in 2003-04, it is estimated that tourists with
bound (while home in their own countries) and a disability:
inbound (while at their destinations)
• Reasons for not traveling reported by PwD • Spent $ 8 bn
• Destination-specific reasons for travel • Contributed $ 3 bn to Tourism Gross Value Added
(12.27%)
II. HOW DO WE TRAVEL? • Contributed $ 3.8 bn to Tourism Gross Domestic
Research on the travel behavior of people with disabil- Product (11.02%)
ities is often guarded as propriety business intelligence • Sustained 51,820 direct jobs in the tourism industry
by industries that have been successful retaining travelers (11.6% of direct tourism employment)
with disabilities such as passenger cruise lines and hotel (Source Darcy: Accessible Tourism, 2008)
chains. Research is seriously lacking on the part of travel
destination nations regarding the number and character- If disability is an interactive process between degree
istics of visitors with disabilities. of function and environment then studies may show that
However we do have some trustworthy data from type of functional impairment correlates to preferences
Australia on how PwD travel. It appears in a section for certain modes of transportation. Similarly improve-
debunking myths in the foundational study From Anxiety ments in the design and quality of tourism infrastructure
to Access: and services ought to result in increased numbers of PwD
traveling.
On average 80-90% of all travel by people with a physi- This hypothesis seems consistent with results reported
cal disability is with a partner/carer, family or friends who by van Horn:
do not have a disability. Of those who undertook travel
with other people with a disability most travelled with 1- A significantly higher percentage of air travelers with
2 other people with a disability. disabilities experience problems at airports than do
(Darcy, Anxiety to Access, 2000) their non-disabled counterparts, 55% versus 45%. The
most frequently cited problems for both groups are
In addition the 2003 study by the Open Doors schedules not being kept and restrictive security
Organization on the American market of PwD as a travel measures.
segment demonstrated that in 2002, American with dis- However, these general issues were mentioned less
abilities often by travelers with disabilities than by the non-dis-
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5. Extracts from the Proceedings of the International Conference
abled. One in four travelers with disabilities (25.39%) As we prepare to implement a global research agen-
complained of schedules not being kept compared to da on inclusion in tourism can we begin now to bench-
more than one in three (37.66%) travelers with no dis- mark how we travel?
ability. Restrictive security measures bothered one in • Market value of a nation’s PwD population as potential
three (34.12%) travelers with disabilities versus almost travelers
one in two (49.13) travelers with no disability (BTS • Actual travel behavior of a nation’s PwD
2003, p.9). • Changes in utilization of modes of transportation fol-
lowing design changes with users broken down by
Instead, those with disabilities complained more often types of disability.
of staff assistance/poor sensitivity, inadequate seating, • Degree of utilization by non-disabled users of design
too much walking and unavailable wheelchairs. More changes done for PwD.
travelers with disabilities also experienced problems on • Patterns in travel companionship by PwD in relation to
airplanes, 32.91% versus 23.61% of those without dis- design or policy changes.
abilities. In each case, the biggest grievance was inad-
equate seating – 68.61% among complainants with III. WHERE DO WE TRAVEL?
disabilities, 52.44% among those without (BTS 2003, p. In order of popularity the most often visited interna-
36-37). tional destinations for Americans with disabilities are: (1)
(Source: Van Horn, Disability Travel in the United States: Recent Canada; (2) Mexico; (3) Europe; and (4) the Caribbean. At
Research and Findings, 2007) this level of analysis travel behavior of persons with dis-
ability does not differ from the general US population.
In addition, travelers with disabilities report of their It is relevant to note that no tourist destination has
intention to travel: ever mounted a marketing or advertising campaign
aimed specifically at the disability market. This failure by
“Air travelers say they would take 2 more flights per year the industry to act in its own economic self-interest is
if airlines were to accommodate their needs as a person especially perplexing in light of the success of a disability
with a disability. This translates into 18.8 million more community organized event called the Deaf Cruise.
flights and means that air spending by the disability Deaf Cruise 2007 chartered an entire Royal Caribbean
community could more than double [from the current Cruise Line mega ship with more than 3,800 deaf passen-
$13.6 billion annually] if airlines were to make necessary gers for one week. Several smaller cruises for the deaf
accommodations.” The top features or services that air- community occur each year. Serving travelers with disabil-
lines would need to offer to encourage more frequent ities is good business.
travel would be:
”1. more accommodating staff, As we prepare to implement a global research agen-
2. guaranteed preferred seating, and da on inclusion in tourism can we begin now to bench-
3. a designated employee at check-in and arrival” mark where we travel?
(ODO 2002, p.10). • Statistics on the number and source of travelers with
(Source: Van Horn, Disability Travel in the United States: Recent disabilities in tourist destinations
Research and Findings, 2007) • Availability of trustworthy destination information on
topics necessary to travelers with disabilities
Anecdotally a South African advocate of Inclusive • Availability of such information in formats accessible to
Tourism reported attending a conference on the recent those with various disabilities
barrier-removal and Universal Design enhancements • Attitudes of residents and travel industry workers on
made for PwD on the UK’s rail system. Only 20% of the PwD and PwD as travelers in the most popular travel
changes could be legitimately said to exclusively assist destinations of the world
PwD. That is, the travel experience of all passengers was • Standardization of building codes and transportation
improved by 80% of the changes made for PwD. policies around international best practices
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6. NEUROLOGY OF THE THIRD MILLENNIUM
• Ability to secure necessary medical or rehabilitative extended to coastal and maritime environments through
care or equipment, carers/attendants, transport of per- the Waypoint Backstrom Principles of inclusive maritime
sonal medical equipment, medicines, or accommo- design.
date assistance animals during travel As a result of this conference the Istituto Carlo Besta
• Establishment of disabled-accessible booking systems will produce a practical tool for travelers with disabilities.
that guarantee access to accessible transport, lodging, Drs Donatella Bonaiuti and Graziella Filippini have set
and entertainment out to create a checklist to direct people with disabilities
In preparing for this presentation I found an article through the process of making well-informed travel deci-
referring to research on public health policy with this sions. I suspect that a consequence of this work will also
provocative title, “We’re not short of people telling us be further insight into the characteristics of good travel
what the problems are. We’re short of people telling us experience for those who are not yet disabled.
what to do”. An appraisal of public policy and mental As we disperse to contribute our own theoretical and
health. practical interventions let me leave us with the seven prin-
Taking this as my cue let me summarize my conclusion ciples of Universal Design as a framework for evaluating
very simply. our efforts:
IV. THERE IS ONLY ONE PRACTICAL SOLUTION – • Equitable Use: The design does not disadvantage or
UNIVERSAL DESIGN stigmatize any group of users.
If we do not apply a design solution to the problems • Flexibility in Use: The design accommodates a wide
encountered by travelers with disabilities we treat only range of individual preferences and abilities.
symptoms rather than causes. • Simple, Intuitive Use: Use of the design is easy to
understand, regardless of the user’s experience,
Universal Design is a framework for the design of knowledge, language skills, or current concentration
places, things, information, communication and policy level.
to be usable by the widest range of people operating in • Perceptible Information: The design communicates
the widest range of situations without special or sepa- necessary information effectively to the user, regard-
rate design. Most simply, Universal Design is human- less of ambient conditions or the user’s sensory abili-
centered design of everything with everyone in mind. ties.
Universal Design is also called Inclusive Design, Design- • Tolerance for Error: The design minimizes hazards
for-All and Lifespan Design. It is not a design style but and the adverse consequences of accidental or unin-
an orientation to any design process that starts with a tended actions.
responsibility to the experience of the user. • Low Physical Effort: The design can be used efficient-
ly and comfortably, and with a minimum of fatigue.
(Source: Institute for Human-centered Design http://www.adaptiveen-
• Size and Space for Approach & Use: Appropriate
vironments.org/index.php?option=Content&Itemid=3)
size and space is provided for approach, reach,
manipulation, and use, regardless of the user’s body
In various parts of the world we have come to refer to
size, posture, or mobility.
the application of Universal Design by the tourism indus-
try to its products at every phase of their lifespan from (Source: http://www.adaptiveenvironments.org/index.php?option=
conceptualization to retirement and replacement as Content&Itemid=25)
Inclusive Tourism.
The same application of the seven principles of Whether applied literally or metaphorically these prin-
Universal Design to the development, marketing, and ciples arising from a consensus within disability culture on
management of destinations is referred to as Inclusive political and practical goals are among the waypoints in
Destination Development. The concept has been the global paradigm shift toward inclusion in tourism.
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7. Editors
Ferdinando Cornelio
Scientific Director
National Neurological Institute Foundation “Carlo Besta”
Milan
Graziano Arbosti
Manager
Socio-Sanitary Research, Scientific Direction
National Neurological Institute Foundation “Carlo Besta”
Milan
Paolo Cornelio
Researcher
Socio-Sanitary Research, Scientific Direction
National Neurological Institute Foundation “Carlo Besta”
Milan
Scott Paul Rains
Publisher of Rolling Rains Report
Scientific Committee Organising Committee
F. Cornelio, Coordinator G. Arbosti, Coordinator
M. Fini M. Luciano
L. Tesio G. De Leo
G. Filippini P. Cornelio
F.A. Compostella C. Gallo
M. Imbriani G. Mavellia
L. Battistin C. Puppo
M. Melazzini L. Vincenzi
G. Filippi N. Gianotti
M. Carletti