When I first started this column in March 2016, I shared that our Rachel and Janneke were not diagnosed; they were instead referred to as medically fragile with complex care issues. In the columns that followed, I have tried to reference their gifts and strengths before describing that which stretches or disables them (and us). Since that first column, our girls have received a diagnosis. As one of three families known, our Rachel and Janneke have Chitayat-Hall syndrome, which refers to a genetic variation on their Magel2 gene. Clear as mud to most of us, the information is spelled out in greater detail in the March 2018 British Medical Journal (BMJ). If you look up the article, we’re known as Family 3.
The diagnosis of Chitayat-Hall syndrome for our girls hasn’t changed anything for our family other than referencing it for paperwork. In fact, specialists know very little about this new syndrome. I’m thankful that our girls have received great care from their beginnings, regardless of the recent naming of the diagnosis. After all, their names are first Rachel and Janneke!
Many of us have experienced the truth that words have the power to both hurt and heal; it behooves all of us to learn, reflect and adapt as we grow in community. For example, one of the more recent changes in our social culture is with the words “special needs”; these two words are better understood and appreciated when replaced with the word disability. Though perhaps well-intended when first created, the phrase “special needs” can be patronizing and debilitating.
Person-first language started with our Creator; He has called us by name (Isa. 43). With that understanding, we live in interdependence with each other as a community of human beings, not human doings. Though disability is very real, being identified solely by the disability creates stigma and de-values the personhood. Particularly with children who are still growing and developing, their identity as someone with a disability is still taking shape. Adults with disabilities or disabled adults may prefer more specific language to their identity. For example, there are adults with autism who prefer to be called by their first name and known as autistic: “My name is Brian, and I am autistic.” Personal preferences may differ from one to another, but regardless of age or ability, person-first language emphasizes the person – the created Being –and it models a universal design to introduction and conversation. Using our names is the best way to start.
You just read something for free.
But it didn’t appear out of thin air. Writers, editors and designers at Christian Courier worked behind the scenes to bring hope-filled, faith-based journalism to you.
As an independent publication, we simply cannot produce award-winning, Christ-centred material without support from readers like you. And we are truly grateful for any amount you can give!
CC is a registered charity, which is good news for you! Every contribution ($10+) is tax-deductible.