The Butterfly Effect of Access Intimacy

Some thoughts for a new book on autism…? Also published on The Art of Autism (ENG) and Autisme is Veelzijdig (abbreviated Dutch version).

In the muggy classroom, even the most recalcitrant boys now seemed too lame to argue. It was a scorching hot day, a few days before the summer holidays. The textbook for Dutch language was finished and the textbook for calculation was far from it, but I believe the teacher had given up on that by now, too. What the heck, it’s almost vacation time anyway, and after that we won’t be her concern. The class discussion began, with the question of the week being, “What kind of job would you like to do when you grow up?” The GP’s daughter wanted to become a doctor herself later; the teacher praised her ambitions. Teacher’s daughter wanted to be a teacher; teacher’s approval of that too. Then it was my turn. I thought for a moment, there is so much exciting stuff in the world I could do… something with animals, for example, or maybe I could become a baker? But on the whole, most of all…. “When I am a grown-up, I would like to work in a library,” I said with a big smile on my face. The teacher looked surprised at first and then started smiling smugly. “You! In a library! Well, Martine, you can’t even spell your own name yet, so put that out of your mind!” Along with the teacher, the other children laughed at me. My cheeks burned and tears pricked behind my eyes. I felt awful. And besides, it was not even true what she said; in fact, I could spell my own name very well, in very many ways.

Fast forward to some 30 years later. Too bad I can’t show the little, ambitious aspiring librarian from then a video of my reality now. Not sure about the grown-up part, by the way, as I have more toys than ever and still dress like I am eight and celebrate my birthday. But more importantly: I work as a librarian in the medieval city centre, in a magnificent cathedral that is literally filled to the brim with sheet music.

How can that be? Well, in a nutshell, that is the concept of Access Intimacy. Defined by disability justice activist and writer Mia Mingus (in 2011), Access Intimacy is about mutual understanding and ease of access between individuals with disabilities and their allies. Unlike other forms of intimacy, such as emotional or physical intimacy, access intimacy focuses specifically on the ways in which people with disabilities navigate their environments and relationships. Access Intimacy is built on trust, communication and a willingness to learn and adapt to the needs of others. For people with disabilities, access intimacy can contribute to a sense of autonomy and belonging by allowing them to fully participate in social, professional and recreational activities. In my case, this means concretely that in the church, the activities I can handle and what I am good at gather around me, so to speak, instead of having to constantly frantically try to squeeze myself into the non-fitting mould of demands and expectations, as I experienced in previous workplaces. In other words: I am succeeding precisely because I dare to show myself more and more.

For instance, recently we needed the sheet music of William Byrd’s “Laetentur caeli” to sing in a service. Of course, at this announcement, I immediately lapsed into my old, familiar, negative spirals. My thoughts ran wild: “Oh dear, what did it sound like, what letters could these be, do any of these words mean anything to me, is there something that sounds like this in my memory?” I could easily have spent an hour haphazardly snatching sheet music from the cabinets like this, hoping to stumble across it by chance and recognise it. But just when I want to accept this doomsday scenario as my potential reality, the conductor interrupts my pondering: “Would you mind grabbing it out of the bookcase? Byrd is spelled with a Greek Y and Laetentur starts with ‘L-A-E’…” Oh yeah, by the BY… and as long as I know where to start looking, I often have it in my hands within seconds.

It feels so comforting that I never have to ask about it and never have to explain anything about my needs – a realization that is hard to put into words, as elusive as it is comfortable, akin to relief and reassurance. A bit like when I gently try the bathwater with a hand or foot and notice that it is exactly the right temperature. So this is how it feels when an outer world connects to your inner world and vice versa – a rather unique sensation in my life. I experience it as a sense of connection, founded on good communication and understanding. At such times, I see disability (any disability) as something normal in human life, and have little to none negative thoughts about myself. It helps me to be open about my feelings and make space for the other person. We can be in the moment and support each other. Sure, I’m autistic and dyslexic and 20 more things… so what? The conductor just knows how I think and work – and it’s not a problem. His attitude of non-judgmental acceptance suddenly makes a workplace accessible.

This is how one person can make a difference and create a “Butterfly Effect”. Just as the wings of a butterfly can start a chain reaction or domino effect (to eventually cause a hurricane on the other side of the world), small actions of inclusiveness and understanding can create big changes in society. When a workplace shapes itself around the needs of people with different backgrounds and skills, it not only helps that one specific employee, but enriches the whole environment. Creating a culture of respect, acceptance and inclusiveness thus leads to better collaboration, innovation and creativity within teams and organisations. I feel fortunate and wish everyone to be known and appreciated like this, not despite, but because of how you are.

Access Intimacy, as far as I am concerned, is therefore not only about what one person or institution can do for another person, but also about how you interact together and take responsibility for each other. It means thinking about how we treat each other, how we feel vulnerable and how power is distributed between people. The real answer comes by learning how to be better together, by understanding that we all depend on each other and that we need to work together. Accessibility and understanding are not just nice perks, they are essential in a just, fair, and righteous society.