From his daughter, who has an intellectual disability, writer Bert Natter learned to approach the world differently: with an open mind and without judgement. We should look more closely at people like her.
Last year I wrote a book about my youngest daughter, who has an intellectual disability and turned 18 this year. In front of Living with Lidewij I drew on the notes I’ve made all her life about her development, but I also consulted philosophers, poets, scholars, and writers of the past, such as the Nobel laureates John Steinbeck and Pearl S. Buck. Only now I Living with Lidewij After I have completed it, I have found that, despite the ideas of all those great minds, I have perhaps learned the most from Lidewij herself. I found that you can also learn from someone who is less smart than you. It is not about factual knowledge, philosophical insights or teaching skills, but about a form of life wisdom.
Raising her has been a task that has demanded a lot from our family, but since Lidewij has been living ‘on her own’ for a few years in a group home of a care institution, with seven other young people and under continuous supervision, we see better and better what a beautiful person she is. .
Lidewij was born in 2004 and was a happy baby – maybe too happy, because she made little move to turn around or later to get up and stand. At the health clinic, the district nurse thought that ‘overprotective parents’ were the problem. The search that my wife Hester and I conducted along neurologists, paediatricians and psychologists only came to an end in 2021. Then it was definitively established by a geneticist that Lidewijs’ delayed development is the result of a rare spontaneous gene mutation, with which about fifteen people worldwide are known. She allegedly suffers from a ‘syndrome without a name’.
She lags far behind her peers in every way, but some areas are relatively more developed with her than others. In terms of intelligence and social-emotional development, she functions at the level of a toddler. As a result of her autism she needs structure, regularity and clarity, but at the same time she is very social, funny and a pacesetter at parties. Lidewij is usually happy, but she can also be sad and angry. Her low intelligence prevents her from intending any harm – she is incapable of doing anything ‘premeditated’.
She is sensitive to stimuli. She immediately follows every voice she hears, everyone she sees, every sign of human activity that comes to her. She has to deal with the vital signs that reach her brain unfiltered through her senses.
Over the years we have managed to slow her down somewhat, because before she regularly asked a complete stranger: ‘Can I sit on your lap?’ Although she is less eager, the unknown fellow man still interests her immensely. As soon as she has a hold, Lidewij intuitively searches for the lowest common denominator and usually that is little more than: I see you, you are here too. She will of course not formulate it that way, but I try to find words for the way in which Lidewij experiences and approaches the world.
From person to person
Lidewij does not take itself as a benchmark for contact. She communicates just as easily with someone who cannot speak as with a doctor. She is inclined to offer help to someone who can do less than she can, but she always feels to what extent the other person needs it.
Most travelers in public transport do their best to stay out of the sphere of the other – as if we still live in the one and a half meter society. Everyone wears earplugs or is engrossed in their phone. We empathize with series on Netflix, follow vloggers who tell about their experiences on YouTube, we learn the dances of TikTok, we read about the stars and the people we admire on social media, we are moved by songs and fascinated by stories, we text with family and friends, but we pay no attention to the flesh and blood people around us. Strangers almost never start a conversation with each other. Me neither. But when I’m with Lidewij, I walk by her hand through another world, a world in which fellow humans are not shadows to be ignored, but living beings with a story.
She often looks for a way to get in touch. Or she draws attention to herself by asking out loud: ‘Is that gentleman over there the daddy or the grandpa of that child?’
No matter how elderly someone looks, I always say, of course, ‘I think the daddy.’
This creates short conversations from person to person, in which all involved are for a few moments more than anonymous passers-by, but actually come to life for each other. They are talk that is superficially about almost nothing, but which you can also consider as fundamental: where are you going, what is your dog’s name, do you have children – however small the talk, I am sure that for most people the day is briefly broken open and in the evening they tell their loved ones about that one special meeting.
A wall of jars of peanut butter
Unlike Lidewij, I often tend not to follow the other, but to think that I know how to help the other. A while ago I ran into a resident of a house for people with disabilities at the supermarket to whom I was introduced during an open day.
John will be about my age. In one hand he held a note and in the other he held a shopping basket with wheels underneath, which he lifted way too high in the air thanks to the long handle with the shoulder pulled up.
The shopping note had written in block letters: ‘1 jar of peanut butter with nuts (orange lid)’.
I looked over his shoulder at John’s view: a wall of peanut butter jars. No wonder I found him indecisive in the midst of the embarrassment of riches which offers a modern supermarket.
I asked helpfully, “So you need peanut butter with nuts and an orange lid, John?”
He looked at his note.
“Okay,” I said. ‘I like it myself. You too, John?’
He stared into his empty basket.
“Look, there, John,” I said, pointing to the Calvé pots.
He nodded.
Moments later, he shuffled towards the cash register with the pot in his basket.
Now I realize that I was communicating with him from a position of telling him what to do, which makes me feel good because I helped him.
John probably wasn’t waiting for my well-intentioned but paternalistic help at all. Presumably he always stood gazing at that abundance for minutes and didn’t mind.
Thanks to the lessons that Lidewij has taught me, I now understand that I would have helped him better by leaving him alone and in his value. I just didn’t do what I intended, with my ge-John.
Don’t send, but receive
Lidewij’s conversations with strangers have no real subject – you could say that she is just talking about a little chat, like children kicking the ball in a square for fun without anyone having to win. Lidewij is curious about family relationships, about parents and children, about pets, her interests are limited. She never has to prove anything, show what she knows, she doesn’t have to be right, it’s all about contact.
There is a famous quote from the 17th century French philosopher Blaise Pascal that all the unhappiness in the world stems from the inability of people to remain calm in their rooms. Gradually I think: the modern calamity arises precisely because people no longer come out of their rooms and doggedly spew curses into the world behind their screens, which are received by other people who sit too long behind a screen to get angry at people who Not Knowing. If only those keyboard terrorists would all come out of their holes to get to know each other and have a face-to-face conversation, instead of typing their grim frustration out into the world.
For Lidewij it is not about sending, but about receiving. To understand what someone else wants.
She no longer lives at home, but when she spends the night with us, I hear her feeding the cat and her service dog Hutsh in the morning. Not only does she use the commands Hutsh listens to, but she also keeps the animals constantly informed about what she’s doing, why certain things are going the way they are, and how long she’ll be doing it for: “I get that you hungry, but you’ll have to wait, honey, because I’m not that fast.’ She takes animals as seriously as people. Such a lack of discernment could be classified as the opposite of intelligent, but also as a form of empathy that transcends intelligence.
Empathy is perhaps the quality we most need at a time when people are grimly digging into their own right, without bothering to listen to the other person and look for solutions together.
Preferably among the people
People like Lidewij are doomed not to really participate in life in public space. Lidewij wants nothing more than to be among people and yet – despite all the efforts of us as parents and counselors – she lives largely on the margins of society. It is nice to live in a civilized country where a healthcare system has been set up that guarantees the financial security of people like Lidewij, of people who can contribute little to the public interest in an economic sense, but it remains a shame that these special people are often invisible: they attend special schools, are tucked away in institutions, work in sheltered environments, and are rarely taken for granted.
We should look more closely at people like Lidewij and learn from them. Since I wrote my book about her, I do my best to learn from Lidewij how to face the world openly without being blasé, without judgment, without expecting the other to adapt to your level. Like Lidewij, I want to be open to others who are not as handy with words as I am. I try not to exclude anyone because of my prejudices. In spite of all the differences, I want to regard my fellowmen as equals and not to ignore them – although I am by no means a saint in this regard. As a diligent student of Lidewij, I hope every now and then to find happiness in a moment in which you really observe the other and together are not strangers, but people.
Maybe I should just write a sequel to my book: Learning from Lidewij.
Living with Lidewij was published by Thomas Rap publishers.