If you just sit with that word a minute, what images does it bring up? I’m guessing they aren’t the prettiest pictures.
Those words mean imperfect. Faulty. Wrong. They aren’t neutral words. In fact they are quite negative.
But that is a word that we use when talking about brand new lives either still growing or just born. “Your baby has a birth defect.” And it’s a pretty short jump to “Your baby is defective.” Imperfect. Faulty. Wrong.
When you get something from Amazon and it is defective, what do you do? Send it back or throw it away. And we are using the same term to label human bodies. Bodies that were created in the image of God. And so often babies who are diagnosed with a birth ‘defect’ prior to birth are in fact thrown away.
How do we expect parents to choose life for their child if we use words like defect? We are allowing the narrative to be written over their lives that they are imperfect and defective.
How do we expect the world to see disability as human and worthy if those lives start from the very beginning with such a negative word spoken over them? If we call the very bodies that they inhabit defective? Imperfect. Faulty. Wrong.
And I know that the word is used to describe something that doesn’t form as expected in the womb. And when that happens we do need to be able to share information with parents and the public in general… We just need new language to dictate how we talk about it.
Abnormality – not the norm
Anomaly – something that deviates from the standard
Birth anomalies happen in our world. Sometimes it’s due to a lack of prenatal care, sometimes the baby is genetically predisposed, but more often than not it is just random. It’s important for doctors and organizations to stress the importance of prenatal care because it is what is best for both mom and baby no matter what. It is not ok for doctors or organizations to make parents feel like an anomaly is their fault.
Birth anomalies can sometimes be surgically fixed to save a child’s life like in the case of a heart abnormality. Other times there are medical interventions and surgeries that can improve the quality of life for that person with an anomaly. Frequently people with birth anomalies use mobility aids, speech aids, or other adaptive equipment to help them navigate the world.
Ivy has Down syndrome. In so many places, Ds is listed as a birth defect. But Down syndrome is not just one part of her body. It is every single cell in her body. So when people say Down syndrome is a birth defect, they are saying that all of her, from the top of her head to the tips of her toes, my sweet beautiful girl, is defective. And I refuse to let those words be spoken over her.
Ivy has a chromosomal abnormality. She is an anomaly. She falls outside of the norm and that’s ok. Medical supports help her lead a happy and fulfilling life, but they don’t define it. She is not defective. Imperfect. Faulty. Wrong. She is human and worthy of love and respect.
My friend has a neural tube anomaly. It formed in a way that falls outside of the norm and that’s ok. Medical interventions have helped her lead a happy and fulfilling life but they don’t define it. She is not defective. Imperfect. Faulty. Wrong. She is human and worthy of love and respect.
The baby born with clubfoot had his bones form atypically. His leg and foot bones fall outside the norm and that’s ok. Medical interventions can help him lead a happy and fulfilling life but they don’t define it. He is not defective. Imperfect. Faulty. Wrong. He is human and worthy of love and respect.
We need to think about how our words speak into and over others’ lives and choose the words we use accordingly. It is something that the medical profession hasn’t gotten very right when it comes to disability. But when we know better, we can do better. We can rewrite the narrative that surrounds any type of genetic or birth anomaly. We can see the human behind the words and honor them.