Q: Do you still call Onna the Dancing Iron Baby?
A: Oh no, we are not allowed to call Onna a baby any longer! Those are clear orders from the boss herself! She is no baby now and won’t let anyone call her anything other than by her first name. But she still dances through this life with such determination and pride, despite the systemic and structural barriers she experiences on a daily basis.
Q: How has Onna met or surpassed your expectations for her when she was a baby, when she was at NWC Kids, and now?
A: Onna has always been Onna, and that she will continue to be—disabled and fully proud of her disability as part of her identity, culture, and community. And we fully embrace and celebrate everything that she is. The only thing I’d say has changed over the years are my own expectations—not towards her, but towards society.
When you start this journey, you are surrounded by well-intentioned people trying to help “fix” your kid or teach her how to mask her disability and to make her appear as indistinguishable and as “normal” as possible so that she “fits in.” But imagine a life of never being accepted for everything that you are, for your humanity; always having your membership in the society conditional on how well you “fit in,” how much you appear to be “normal.” People with disabilities are valuable and worthy members of our society just as they are.
While there exists a lot of discrimination and barriers for disabled folks, those are the fault of society, not inherent in anyone’s impairments. So, it is not Onna and those like her that need fixing, but it is our society that needs to be fixed and step up to ensure access, inclusion and equitable opportunities in life, and full membership of all individuals.
Every step toward a more inclusive world is a step toward a better world. So yes, we expect and demand this societal change, and we teach Onna that she unapologetically demands her membership in this world.
Q: How have things changed since you had your little boy? What is their relationship like?
A: Onna is a very empathetic child and finds it challenging when others are crying and upset. And we all know how much babies cry! So it took some time for Onna to get used to a baby in the house. But her brother Corbijn is a big boy now and they have a wonderful relationship. They are great support for each other and look out for each other. Occasionally, we may have difficulty in understanding what Onna is communicating to us, but her brother always understands her perfectly.