Dwarfism Awareness 2020
October is Dwarfism Awareness Month when thousands of families around the world advocate for the people they love and educate on what it is they want people to know about dwarfism.
What I want you all to know has hopefully been woven into every single thing I’ve shared online for the past four years–yes, in posts specifically about dwarfism, but more so in what I’ve shared that isn’t–the celebrations, the holidays, the family trips, the everyday stories of raising a family and filling in the gaps with the sweet simple pleasures that bring joy to all of our lives.
I thought I’d use this opportunity on this day to answer a few questions about Mira and dwarfism.
1. Does dwarfism run in our family?
No. Achondroplasia occurs in approximately 1 in 25,000 to 40,000 births. 80% of these cases (meaning... the other 20% would be born to little people) occur randomly by a mutation of a specific gene (FGFR3) during conception. This gene provides instructions for making a protein that is involved in the development and maintenance of bone and brain tissue. It’s important to note that my chances of this occurring are the same as yours. This always surprises people.
2. What are the appropriate terms to use in talking about a person with dwarfism?
The PC terms are dwarf, little person, person of short stature and person born with dwarfism. I personally do not like the term dwarf because I don't think it conjures up positive images in the average American's eyes. The word 'midget' is on the National List of Derogatory Words and is considered highly offensive. Not just to describe a little person but in any fashion of the word. Average-height is the term used for referring to a person without dwarfism as opposed to normal-height or regular-height.
3. How tall will Mira be?
We don't know exactly, but likely between 3.5 ' and 4.5' based on averages. She has her own set of growth charts based on individuals with achondroplasia and she is not compared to an average-height child's growth chart.
4. Does Mira know she has Dwarfism?
We ask ourselves this a lot lately, especially since Mira is so smart and so self-aware. Just a few weeks ago Mira said, “Mom, I don’t want to be small. I want to reach everything.” Truthfully, I wasn’t prepared for this and it took my breath away. We are learning how to talk openly with Mira and at the same time not inundate her with information we don’t think she will understand.
5. What are you trying to do with your advocacy?
When it comes to dwarfism awareness, as a family, we have decided to open up our lives. We want people to see our daughter and to take away the mystery that surrounds dwarfism. It is a rare condition and odds are likely that unless you found this blog because you have a connection to dwarfism, Mira may be the only little person you ever "know." Because of the history of dwarfism and some current views and exploitations that still occur in our society, it is important to our daughter's future for us to share her story.
I know what it feels like to be the mom of a special needs child, and it is in that role that I have felt fueled to advocate more fiercely for the rights of individuals with dwarfism. Sometimes it takes wondering what it would be like to wear the shoes of the parent of a child with a special needs to force us to be more compassionate.
I hope that reading this blog has allowed you to feel the challenges and joys of raising a child with dwarfism. And, in doing so, I hope you are more aware of every individual’s capabilities and contributions and maybe, just maybe, your own as well.
You have been a part of this team for 4 years now (if not longer). Every single time you share a post, share our story, share our photos, you are taking a turn as an advocate for Mira.
Since Mira was born, this community has been so gracious in supporting our mission to spread awareness and I can’t begin to tell you what that means. It takes a village, and we are so grateful that you all are a part of ours.
DWARFISM AWARENESS MONTH
October 2020