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