Everyone, on the bus!
An invitation to rare parents to rethink inclusion
Just recently, our three-year-old preschool-aged friend from Uganda called Izzy drew what is perhaps the best illustration of inclusion that I have seen. His mother described the picture simply as “everyone on the bus”. In the drawing, Izzy includes me, a middle-aged, middle-class, Euro-American woman, and my son Evren, a young man of twenty with ASMD, or acid sphingomyelinase deficiency, which has caused significant vision impairment and some facial differences (among other non-visible impacts). Remarkably, Izzy, who is actually driving the bus, doesn’t care that our ages and ethnicities are different, that we come from different walks of life, or that Evren has a rare disease that makes him look a little different. In fact, Izzy doesn’t even register these differences—all he sees is the joy and the value of including each one of his friends on the bus, a metaphor for his life’s journey.
Upon recognising this drawing as an authentic representation of inclusion, almost instantly I thought to myself, Oh, that we could all see our fellow human beings this way, through the innocent eyes of a child, with complete disregard for physical and social class differences, intuitively aware that our lives are enriched by the presence of other human beings!
But no sooner did this thought materialise than I remembered an incident his mother Veronica shared with me, that of Izzy’s meeting Tara, a little Ugandan girl his age. Tara was born with a nasal haemangioma, not a rare disease, but a condition that results in a striking facial difference. Izzy, who had prior exposure to physical differences through his brother Jace, who had severe cerebral palsy, was startled when he first saw Tara and resisted an invitation to play. At age three, Izzy cannot be faulted for what was an unconscious reaction to a physical difference.
So what does this anecdote imply for the parent of a rare child?
By no means am I suggesting we stop our dedicated efforts to advocate for inclusion. But helping our children thrive in an often exclusive world means that our approach to advocacy must not be limited to effecting change in others.
Andrew Sullivan, graduate of Oxford and Harvard and author of an essay entitled What’s So Bad about Hate? explains that, to an extent, human brains are hard wired to prejudge others. His implication is that humankind’s tendency to prejudge is to some extent unconscious, and thus exclusion is not fully eradicable. Sullivan goes on to argue that we must make ourselves “bully-proof” or acquire some mental armour against exclusion since it’s never going to disappear completely.
Developing that protective layer entails teaching our rare children about their innate value and worth as human beings, regardless of the extent of the physical or cognitive impacts of the rare disease. It all begins with two foundational beliefs: (1) that all human beings are born with gifts and with purpose, and (2) that each one of us is inherently worthy of love, respect and belonging, despite any contradictory messages sent implicitly or explicitly.
Certainly nice words, but here’s the catch. A chaplain friend of mine often remarks, “You can’t give something away that you don’t have.” It’s a fact that even as adult parents, many of us wrestle with our own sense of self-worth. It’s fair to say that most of us have at some point determined our self-worth using a myriad of deeply misguided criteria such as our academic, athletic or career achievements, our appearance, assets, social standing and relationship status. Some of us still do.
But we must abandon these poor criteria and shift our focus onto our own inherent value as human beings with unique gifts and purpose and learn to consistently use a better measuring stick for our own self-worth. Then we can instil in our children the truth we want them to embrace, or defend that truth for them if they cannot for themselves.
So this is my open invitation to all rare parents. Let us continue this journey through life—and parenthood—by fully celebrating our own innate value as unique human beings who are equally worthy of love, respect and belonging, so we have this truth to give away to our children. Knowing what self-worth is and believing that inherent worthiness is a gift given to each of us are the first steps towards becoming advocates for inclusion and to equipping ourselves and our children for inevitable encounters in a world that will at times be exclusive. Hope to see you all on the bus!
Other writings by Kara
