Having a daughter with special needs has taught me so much. It’s not all fun (most of it isn’t), but it has forced me to pause and reconsider much about the way I navigate the world–and especially how she does. At almost 11, she is non-verbal, which means that I often think about how to communicate for her, represent her for herself in ways I interpret she might wish. Admittedly, a lot of this is reading between the lines, and I make a lot of mistakes along the way.
One of the most important things I’ve learned is to help others recognize her as a child. A person who has special needs, rather than a special needs person. To see her as a person first, and after that as a person with disability. In all honesty, there are days when this language helps me even as her mother “re-see” her when the hours are fraught with difficulty and relentless care. She is a child, my child. And, yes, she has disabilities too.
And one of the ways I can help her navigate her world is to help the world see her more in this light. So, I never refer to her as a special needs child. I gently prompt others whenever possible to consider a person-first label for her and for others. Is this about an agenda of political correctness? No, it isn’t. It is about helping our daughter be received with hope, and embraced by her wider community to the extent that she can be.
When it comes to this type of terminology discussion in diabetes, I see parallels. I inwardly cringe at the term diabetic. It feels like an adjective, rather than a description of a person who lives with something difficult. I feel empowered by the phrases “Person with diabetes” or “I have diabetes.”
I recognize that not everyone feels this way, that sometimes the PC machine puts the cart before the horse. But I do wonder whether a change of language can change the tone around difficult aspects of our lives and infuse our conversation with hope.