Since meeting #MightyWoody for the first time, we've learned some new vocab words. It seems appropriate to share those now as everyone thinks about getting back to school from spring break tomorrow. Here are some of our #LimbDifferenceAwareness words (with a special thanks to Dr. Julie Ann Zitterkopf Larson for her book "I Have A Doll Just Like You" and to Katie & Paul Leatherwood for the book "Look What Kate Can Do"):
Limb: A word that can mean either arm or leg
Congenital limb deficiency*: When a baby is born missing part or all of a limb(s).
Acquired limb deficiency: When part or all of a limb is lost to trauma or is removed due to a medical condition such as infection
Prosthesis: An artificial body part used in place of a body part that is absent
Amelia: Congenital absence of one or more limbs
Amputee: A person who has part or all of an arm or leg surgically removed
Amniotic Band Syndrome: Occurs when the fetus becomes entangled in fibrous string-like amniotic bands in the womb, restricting blood flow and affecting the baby’s development. (more on this in another post...this is what caused NFL player Shaqueem Griffen's limb difference)
Symbrachydactyly: a congenital abnormality where a child is born born with short fingers, which may be webbed, or they are missing fingers. Usually this happens on only 1 hand, and the other hand looks typical.
Nubbins: little stumps of skin and soft tissue where the fingers would be (aka tiny "fingers" that do not have any bones in them). In some instances it is recommended that these be removed. (#MightyWoody has nubbins. We have left them in place for now.)
Residual Limb: the part of the body that remains after an amputation has been performed (more commonly called a "stump")
*One of the words that we have struggled with the most is "deficiency". In my opinion it serves a purpose as a medical definition but it is a challenging one when you translate it to a person. Same goes for "birth defect." We are still deciding what we think about nubbins and stump. I've heard them before and never thought anything of them.
It's made me ponder other words in our language that are simply inadequate at capturing the complexity of human beings and the human spirit. Words that become shortcuts for describing a circumstance that are ultimately translated to actually describing the person. They can become engrained into a person's identity, for good or bad. They can also be co-opted and used by others to tease or bully. Ultimately, the problem I see is how one overarching characteristic or fact about a person consumes an entire human being's identity and then that word is used to encapsulate an entire existence. I'm seeing more that this happens in a number of different ways where we seek shorthand through language. Some days language just feels woefully inadequate.
One of the terms that I did learn shortly after #MightyWoody was born was "differently-abled." I really like this term. But I've come to see that some identify potential challenges with it. I understand some of those too, although I still find this a better descriptor for him than others we could use. And to be honest, I'm trying to stop with the whole describing all together. I probably need to make sure I don't get into a habit of saying this is my one-handed son. Rather, this is my younger son, he was born with one-hand. But this is difficult.
Part of what makes this so challenging is that Woody is not yet old enough to tell us what he wants. But I guess that is all of parenting! I had this problem when deciding names...your name is perhaps one of the most intimate parts of your entire persona...it was a big deal to think about making such an important decision for a new person.
Anyway, I went in search of the origins of the term differently-abled and the interwebs brought me to a fascinating page on recommendations from the National Center on Disability and Journalism at Arizona State University. You may find it interesting too.
**Some of these definitions are paraphrased from very complex descriptions. I welcome clarifications or corrections but have tried to make them simple to understand. And I am still learning.