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Travelling with Down Syndrome. The #NothingDownAboutIt project

From February to May 2019, two students from the Brussels University ULB (Université Libre de Bruxelles), Aoyun Zhan and Eva Franzoso, carried out a research on tourism for people with Down Syndrome, in collaboration with Thomas and Valentina of the Destination Everywhere team.
The research project was called #NothingDownAboutIt, from a popular Instagram hashtag in the Down Syndrome community. The question was: do people with DS have “special needs” when going on a holiday?

The methodology: online research and fieldwork

The research was part of a collaboration between the Master in Management of Tourism of the ULB and Destination Everywhere. As a company specializing in travel for people of all abilities, we wanted to find out what were the activities most appreciated by people with DS of various ages, and how they prefer to travel. Aoyun and Eva, coordinated by our colleague Thomas and our intern Valentina, had an initial briefing on the project, then started their research for activities offered for this specific type of public, with an online research in various languages.

As part of the fieldwork they were very kindly hosted for a day by local association Gratte, where the team gave them an introduction on the activities that they organize for their members, who are teenagers and young adults with different types of learning disabilities. And they answered a lot of questions. To complement the research, Aoyun and Eva created an online questionnaire that was shared within a French speaking Facebook group focusing on Down Syndrome, where they collected 35 answers. What follows is the result of their research, and some interesting examples of adapted and you can find some inclusive holidays that travelers with Down Syndrome can enjoy with their families and friends in this article.

Travelling with the family and… a good night’s sleep

The answers to the online questionnaire were given, in 31 cases on the total of 35, by parents of a person with DS, and their favorite holiday was one with the family, whereas the members of Gratte can go independently on group holidays, organized by the association. However, both the Gratte session and the online questionnaire highlighted the importance of sleep.

For the family holiday the main motivation to take a holiday is actually resting, taking a break, with all the other reasons in second plan (discovering nature, amusement parks, music, food, swimming pool) and the main goal is to have a good balance between daily activities and sleep. Cultural activities such as museum visits, intense sport activities and too tight tour programs were not considered very popular.

The dream destinations

The favourite destinations that stand out the most among respondents are in line with those of Belgian travellers in general: France, Spain and Italy. As for the dream destinations mentioned, meaning places that the person had never been to and would love to visit, only Australia really stood out with more preferences. In general the selected dream destinations tended to be exotic and warm ones (Hawaii, St. Barthélemy, Malaysia, Argentina, Madagascar). The general length of stay was between 1 and 2 weeks, the most common means of transport to reach the destination were the car for short and medium distances, and the plane for long distances. The major problem faced while on holiday is the language barrier.

In general, the choice of vacation and destination is not made by the person with Down syndrome but by the parents, and they search for information mostly via the internet. Most of the people with DS interviewed did not use social media (although some did, under supervision of the parents).

At the end of the research, the research team created a list of travel agencies and associations that organise trips and holidays for people with DS and their families and friends. You can find a selection of these activities here.

Conclusions: 2020 is the year when “We decide”

This year, the slogan for the World Down Syndrome day is “We decide”, in perfect harmony with the current mentality shift where people are fighting for independent living, against an institutionalised approach to disability (“institution, no solution”), and for a world where decisions at a political – but also at all – levels cannot ignore the voices and inputs of people with disabilities: “nothing about us without us”. These approaches are not entirely new in the disability rights movement, which dates from at least the Seventies (the recent movie “Crip Camp” gives a wonderful visual portrait of that period, interesting also for a comparison between today’s messages and what was already being said and done at the time).
However, what is new, and wonderfully powerful, is how fast these messages are able to spread and be made personal and brought into everyday life behaviour by a growing number of people – all over the world. This is why when re-elaborating this article for publishing, after almost one year, it felt there were a few elements to think about. On the one hand we see something that was totally expected: the families, the parents reponded to the online questionnaire, because young adults and adults with DS do not really choose their holidays – nor go online unsupervised. Holidays are a family thing, which is fine, but then of course it is totally normal and human that rest is a central component of these holidays.
That is the concept behind, for example, respite holidays, which can be fundamental to assure that everyone in the family has “a break” from everyday life, and the parents are most in need of rest – so that is what they all said in the survey.
On the other hand, after a day spent with the association Gratte, and looking at the offer of the various specialised travel agencies that were found, it clearly emerged that a teenager or young adult with DS can totally have a holiday on her/his own, with a group, with people who know how to handle everyday life issues. But most of all imagine and plan activities that are fully enjoyable by all participants. How these activities are “adapted” to their “special needs”, like in the brilliant video we shared at the beginning of the page, is no rocket science, but is not something you improvise either, hence the trained staff and volunteers.
One central element is making things clear, having simple and understandable messages and adapting the pace to the person’s rythm. And having fun and being kind, of course!
Probably the reason why cultural activities are deemed to be “less interesting”, compared to sports for example, is also that often the contents of cultural institutions and museums are too complicated to be decyphered and enjoyed by people with learning disabilities, and need an additional figure, a guide, or special supports to make them fully enjoyable. Some museums have done wonderful work in this sense, and there is a training for guides, created by the European Network on Accessible Tourism, for guides to learn how to guide people with learning disabilities.
The tools are out there, and with education and participation, and a radical shift in how people with learning disabilities are perceived in society, the possibility to lead an independent life will open up.


We wish to thank the ULB students Aoyun Zhan and Eva Franzoso for their research work, and Thomas Ardui and Valentina Lavagno of the Destination Everywhere team for the coordination. A big thank you to the team of the association Gratte for hosting the team and dedicating their time and expertise. This article was re-elaborated by Eleonora Censorii with the support of Stanislas Nozal.We hope you will enjoy our articles, let us know your feedback in the comments!

Aoyun Zhan and Eva Franzoso

 

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