Solutions Overview Milano
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Transcript of Solutions Overview Milano
Scott Paul RainsPublisher of Rolling Rains Report
e are asking new questions for a new era: “Is
tourism an appropriate intervention for moving a patient
from disability to social reinsertion as we practice neurol-
ogy in the Third Millennium? If so, what are the proto-
cols?”. I am not a neurologist, or a rehabilitation medi-
cine 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-observer.
If I had the intellectual preparation I would organize
my answer to our questions solidly within a rehabilitation
medicine or ideally a public health argument. Fortunately
Dr. Leonardi has skillfully begun that process this morn-
ing by grounding the definition of disability in the WHO
ICF understanding that disability is an interaction
between function and environment. This assures that we
adopt a broad enough definition of who the patient is to
know that the treatment protocol requires effective social
intervention. That is, by definition we have moved from
treating a single nervous system to impacting the collec-
tive social nervous system.
So we come to the second revelation about my
methodology. I contextualize in metaphors.
My academic preparation is in theology. It is a world of
parables, poems, reflection on inner experience, and val-
ues-based social engagement as well as close readings of
texts. Therefore I propose metaphor to organize my
answer 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. From her
I am learning about sailing. Waypoints, for example, are
selected points along the route that indicate that you are
proceeding correctly.
At the end of each section I will identify some “way-
points” on the journey toward full inclusion of people
with disabilities in travel.
At this conference I see two of the three necessary
passengers on board, on the agenda, and speaking:
medical professionals and those of us with disabilities. I
want to pick up one more set of passengers: business
stakeholders in the tourism industry. From each set of
passengers we can draw recommendations on how to
chart a research and action agenda and which waypoints
to benchmark for measuring change.
A review of the literature tells us which way the wind is
blowing. Each set of passengers is listening for some-
thing slightly different, Ok, andiamo. Buon vento naviga-
tores!
Our medical passengers want to have data to satisfy
the requirements of evidence based practice. Our busi-
ness stakeholders want data that allows them to predict
sustainability through financial profitability. Our passen-
gers with disabilities want data that assures them not
only of the physical accessibility of the means of trans-
port, lodging, and entertainment but of its cultural inclu-
sivity as well.
25
W
Inclusive Tourism – Participant/Observer Notes on the Global Paradigm Shift Toward Solutions
Three simple questions hold answers relevant to each
of our three constituencies: *
1. Why do we travel?
2. How do we travel?
3. Where do we travel?
I. WHY DO WE TRAVEL?
A preliminary study by Dr. Shu Cole is underway inter-
rogating the motivations for travel among people with
disabilities. She reports:
In the limited literature on travel for people with dis-
abilities, some have demonstrated that people with
disabilities have the same desires and motivations for
travel (Baker, 2005). Others have suggested that trav-
el 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 des-
tiny 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 conclu-
sion he notes:
This scoping project has broken new ground in accessi-
ble tourism through accessible destination experience
development.
Where previous work on accessibility has focused on
individual enablers – transport, accommodation, attrac-
tions, 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 expe-
rience 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.
Researcher Laurel Van Horn quotes the Open Doors
Organization study of the US travel market,
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 Findings, 2007)
and the 2002 U.S. Department of Transportation Bureau
of Transportation Statistics Freedom to Travel report:
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)
Dr. Shu’s pilot study is informed by this research and
explores the following questions:
1. Why are people with mobility impairments passion-
ate about leisure travel knowing the potential barri-
ers they would encounter during travel?
2. What is the role of leisure travel in the lives of people
with mobility impairments?
3. Has leisure travel impacted their quality of life? If yes,
how?
This new trend toward study of the motivation for trav-
el on the part of persons with disabilities can be applied
by researchers in rehabilitation medicine and public
health policy. We are still awaiting analysis of the data
gathered by Dr. Shu from her focus groups. Dr. Shu tells
me she is actively seeking sponsorship to mount a full
study of these questions. Perhaps there is room for collab-
oration on this topic.
As anecdotal evidence I note that my motivations for
travel have changed over time. My first travel after paraly-
sis 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 the Shakespearean theater in Ashland Oregon.
Extracts from the Proceedings of the International Conference
26
* 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 nationwidestudy 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.
NEUROLOGY OF THE THIRD MILLENNIUM
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 after 4 months’ hos-
pitalization.
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 on
best practices that guarantee the quality of life of others
in the disability community.
As we chart a global research agenda on inclusion in
tourism can we begin now to benchmark why we trav-
el?
• Reasons for travel reported by PwD
• Attitudes about travel by PwD measured both as out-
bound (while home in their own countries) and
inbound (while at their destinations)
• Reasons for not traveling reported by PwD
• Destination-specific reasons for travel
II. HOW DO WE TRAVEL?
Research on the travel behavior of people with disabil-
ities is often guarded as propriety business intelligence
by industries that have been successful retaining travelers
with disabilities such as passenger cruise lines and hotel
chains. Research is seriously lacking on the part of travel
destination nations regarding the number and character-
istics of visitors with disabilities.
However we do have some trustworthy data from
Australia on how PwD travel. It appears in a section
debunking myths in the foundational study From Anxietyto Access:
On average 80-90% of all travel by people with a physi-
cal 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 addition the 2003 study by the Open Doors
Organization on the American market of PwD as a travel
segment demonstrated that in 2002, American with dis-
abilities
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.
(ODO 2003)
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 with
a disability:
• Spent $ 8 bn
• Contributed $ 3 bn to Tourism Gross Value Added
(12.27%)
• Contributed $ 3.8 bn to Tourism Gross Domestic
Product (11.02%)
• Sustained 51,820 direct jobs in the tourism industry
(11.6% 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
type of functional impairment correlates to preferences
for certain modes of transportation. Similarly improve-
ments in the design and quality of tourism infrastructure
and services ought to result in increased numbers of PwD
traveling.
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-dis-
27
abled. 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 dis-
ability. 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 dis-
abilities. In each case, the biggest grievance was inad-
equate 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 Findings, 2007)
In addition, travelers with disabilities report of their
intention to travel:
“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 air-
lines 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 Findings, 2007)
Anecdotally a South African advocate of Inclusive
Tourism reported attending a conference on the recent
barrier-removal and Universal Design enhancements
made for PwD on the UK’s rail system. Only 20% of the
changes could be legitimately said to exclusively assist
PwD. That is, the travel experience of all passengers was
improved by 80% of the changes made for PwD.
As we prepare to implement a global research agen-
da on inclusion in tourism can we begin now to bench-
mark how we travel?
• 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 fol-
lowing 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?
In order of popularity the most often visited interna-
tional destinations for Americans with disabilities are: (1)
Canada; (2) Mexico; (3) Europe; and (4) the Caribbean. At
this level of analysis travel behavior of persons with dis-
ability does not differ from the general US population.
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 passen-
gers for one week. Several smaller cruises for the deaf
community occur each year. Serving travelers with disabil-
ities is good business.
As we prepare to implement a global research agen-
da on inclusion in tourism can we begin now to bench-
mark where we travel?
• Statistics on the number and source of travelers with
disabilities in tourist destinations
• Availability of trustworthy destination information on
topics necessary to travelers with disabilities
• Availability of such information in formats accessible to
those with various disabilities
• Attitudes of residents and travel industry workers on
PwD and PwD as travelers in the most popular travel
destinations of the world
• Standardization of building codes and transportation
policies around international best practices
Extracts from the Proceedings of the International Conference
28
NEUROLOGY OF THE THIRD MILLENNIUM
• Ability to secure necessary medical or rehabilitative
care or equipment, carers/attendants, transport of per-
sonal medical equipment, medicines, or accommo-
date 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 uswhat the problems are. We’re short of people telling uswhat to do”. An appraisal of public policy and mentalhealth.
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 disabilities we treat only
symptoms rather than causes.
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 sepa-
rate 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 http://www.adaptiveen-
vironments.org/index.php?option=Content&Itemid=3)
In various parts of the world we have come to refer to
the application of Universal Design by the tourism indus-
try to its products at every phase of their lifespan from
conceptualization to retirement and replacement as
Inclusive Tourism.
The same 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 this conference the Istituto Carlo Besta
will produce a practical tool for travelers with disabilities.
Drs Donatella Bonaiuti and Graziella Filippini have set
out to create a checklist to direct people with disabilities
through the process of making well-informed travel deci-
sions. I suspect that a consequence of this work will also
be further insight into the characteristics of good travel
experience for those who are not yet disabled.
As we disperse to contribute our own theoretical and
practical interventions let me leave us with the seven prin-
ciples of Universal Design as a framework for evaluating
our efforts:
• Equitable Use: The design does not disadvantage or
stigmatize any group of users.
• Flexibility in Use: The design accommodates a wide
range of individual preferences and abilities.
• Simple, Intuitive Use: Use of the design is easy to
understand, regardless of the user’s experience,
knowledge, language skills, or current concentration
level.
• Perceptible Information: The design communicates
necessary information effectively to the user, regard-
less of ambient conditions or the user’s sensory abili-
ties.
• Tolerance for Error: The design minimizes hazards
and the adverse consequences of accidental or unin-
tended actions.
• Low Physical Effort: The design can be used efficient-
ly and comfortably, and with a minimum of fatigue.
• 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.
(Source: http://www.adaptiveenvironments.org/index.php?option=
Content&Itemid=25)
Whether applied literally or metaphorically these prin-
ciples arising from a consensus within disability culture on
political and practical goals are among the waypoints in
the global paradigm shift toward inclusion in tourism.
¨¨¨
29
Editors
Ferdinando CornelioScientific Director
National Neurological Institute Foundation “Carlo Besta”Milan
Graziano ArbostiManager
Socio-Sanitary Research, Scientific DirectionNational Neurological Institute Foundation “Carlo Besta”
Milan
Paolo CornelioResearcher
Socio-Sanitary Research, Scientific DirectionNational Neurological Institute Foundation “Carlo Besta”
Milan
Scott Paul RainsPublisher of Rolling Rains Report
Scientific Committee
F. Cornelio, CoordinatorM. FiniL. Tesio
G. FilippiniF.A. Compostella
M. ImbrianiL. Battistin
M. MelazziniG. Filippi
M. Carletti
Organising Committee
G. Arbosti, CoordinatorM. LucianoG. De LeoP. Cornelio
C. GalloG. MavelliaC. PuppoL. VincenziN. Gianotti