Designing the built environment to be inclusive of all ages and abilities is a relatively recent concept. Barrier-free architecture, when I was a college student, referred to building construction standards mostly for people with physical handicaps. Currently, accessibility guidelines encompass multisensory accommodations for a range of physical and mental abilities. Yet, it is often the social barriers that are more insurmountable than the physical ones. This is especially true for differently-abled people whose handicap is not always visible but no less stigmatizing. Even talking about neurological disorders and mental illness can be awkward for the neurotypical. The efforts of two round-table discussions held during the Semaine d’Accessibilité at the Musée Quai Branly Jacques Chirac are therefore commendable.
The fourth edition of Accessibility Week at the museum in Paris may be described as cultural diversity encounters neurodiversity. While the various events embraced all human differences, the theme for this year’s table-rond discussion was neurodivergence. That precise word was not used (it was a francophone presentation after all) but I believe that the spirit or intention was neurocosmopolitan. The term was coined by Ralph Savarese and Nick Walker whose blog Neurocosmopolitanism has a clear definition. It hasn’t been translated in French, to my knowledge, so this piece is titled Neurocosmopolite to express my understanding of the two discussions. One raised questions about accessibility policies, social awareness, acceptance and inclusion of the neurodivergent population. The other went even further towards an appreciation of the value each individual contributes to our neurodiverse society.
The full description of the first presentation can be found on the museum’s website in french. Click on the title to the left. Loosely translated : How do neurotypical people across world cultures view people who do not fall within their society’s norms and how do they treat them? The word folie in the title threw me off as it means “madness” However unjust, it is true that any behavior that does not conform is often perceived as crazy in the same way that people with communication disorders are often perceived as intellectually delayed. The director of Psycom revealed interesting research that confirms such attitudes. Although the study was limited to mental health in France and francophone countries of Africa, she provided pertinent data and insight.
A social anthropologist from Camaroon gave a different point of view with a video of a naked woman bathing herself at a carwash. In an urban context, the phenomenon drew crowds of onlookers and a newscam. Personal hygiene in her rural village, where attitudes about nudity differ, does not elicit attention. The term mental illness is practically non existent in some cultures, according to another account he relayed. Some consider problematic behavior an affair of the heart not the head. If the heart is considered good, the village cares for the afflicted but if it is bad the person is excluded. It was not always clear to me as he spoke of Gabon, Congo or Camaroon which central African country he meant but overall I heard the word sociothérapie and understood “it takes a village”. This led to discussion about what is considered “acceptable” shifts not only between cultures but over time. For example, people hearing voices and speaking back to them could easily pass for a cellphone conversation. Still another perspective came from french author Corine Sombrun who described her experience in Mongolia. While making a documentary, the Shaman’s music put her in a trance. She learned to reproduce this state so that Canadian neurologists could study the alterations in her brain.
The second presentation was about the artistic practice of people with an intellectual or developmental delay or mental illness. Panelists representing four innovative artist collectives La “S” Grand Atelier in Belgium, Espace Multimédia Gantner and Arts Convergences, in France, showed work by their visual artists. Each differed slightly in their programming, some have artists from all disciplines, some offer residencies. All stressed the importance of considering the artists first and foremost and the disability only in terms of what supports are necessary for the artists to accomplish their projects.
BrutPop produces music and runs workshops, mostly for autistics, using Fablabs. They ran a workshop during accessibility week at the museum inspired by trances and musical instruments from across the globe in Quai Branly’s collection. The young participants (ages 9 and up) were able to make their own instruments. The collectives participate in cultural festivals, expose in galléries and collaborate across disciplines. They have distanced themselves from the medical model and most of the support staff or mentors are artists themselves. Asked if they considered this art therapy, all answered no but art is a manner of expressing oneself and that the benefit of being recognized by others for your talent has positive effects. In the case of Art Convergences, the artists are more autonomous but have mental illnesses. Nonetheless, the artists that mentor them are not therapists and are not necessarily informed about a diagnosis. Art Convergence held an award ceremony at the end showing short videos destimatizing mental illness. The full description can be found on the museum’s website in french. Click on the title to the right.
After attending both, I would compare the experience (based on my personal point of view and perhaps limited understanding) to looking for a book in a library. At times I find an entirely different book which at first intrigues then delights. Often, I find exactly what I am looking for but it isn’t what I expected. No matter how satisfying, fiction or non-fiction it always leaves me wanting more. There were many more interesting questions, by the moderators, than answers as one might expect in a limited timeframe. What was lacking, in my opinion, was a point of view from self advocates. The New York Times has an excellent series by prominent authors about their own personal journeys with a disability and their perception of society’s attitudes. There are several resources on the links above, usually in French. I also recommend Neurotribes by Steve Silberman.