Why Dwarfism Awareness Month Matters to My Family

“Why are you so small?”

“Why is your little sister so much bigger than you?”

“What does dwarfism mean?”

“Are you a midget or a dwarf?”

These are just a few of the questions my son encounters frequently. Giovanni was born with a rare condition called Schwartz-Jampel syndrome which is one of more than 200 types of dwarfism. I always talked with him about dwarfism, but Giovanni didn’t fully understand what that meant until he started kindergarten and saw other children his age. As a family, we have made every effort we can to bring awareness not only on the internet, but also within our community. It is getting easier for Giovanni to talk about his condition and what dwarfism means, but it wasn’t always easy.

One week during first grade, the school nurse called every day shortly after noon saying Giovanni was asking to come home early. After the fourth day in a row, I began to wonder what was going on. When we asked him, he began to cry that the other children were mean to him at recess. Giovanni thought he would just avoid recess and the taunting by coming home early. The boys were making fun of him because he couldn’t walk fast. They even told him that he would never win a foot race because he walked “funny.” When my son started using his wheelchair, the children would say, “Look at the little baby in his wheelchair! Isn’t he cute?”

I could go on and on about the comments made to my little boy that have broken his heart. Giovanni became sad not just because of the bullying, but he started to feel angry about being born with dwarfism. We have taught Giovanni how to explain his condition and dwarfism to his schoolmates. That has made a big difference and has really boosted his self-confidence. This year is the second year he has talked to his class about dwarfism on his own without my help. We are so proud of him, and he has made so many friends!

The important thing for Giovanni was determining whether someone was making a comment because they genuinely didn’t understand their statement was hurtful, or if the person was just trying to be mean to him because he is different. For example, when a child asked him if he was a “midget” or if he was a dwarf, we knew the child genuinely thought there was a difference. The child didn’t know that the m-word is incredibly insensitive to the little people community. We have since taught all of Giovanni’s classmates why that word is so hurtful.

We take any opportunity we can to educate people and show that Giovanni is capable of doing things for himself. He just may need to find another way — like when he asked us to help him participate in a 5K for breast cancer. His power wheelchair made it possible for him to finish the 3+ miles under his own power. Giovanni is so proud of this accomplishment because he finished a race on his own, proving everyone that doubted him wrong.

This is why the month of October, Dwarfism Awareness Month, is so important. It gives us a chance to talk about dwarfism and to talk about which words are offensive. Shining the spotlight on dwarfism gives children like Giovanni a chance to showcase how they are capable of doing anything. They just may need to find another way to accomplish their goal. Talking about dwarfism allows average height people to see that little people are just that — little people. Not the butt of some awful joke. Little people have families, dreams, and goals they hope to reach in their lives — just like everyone else.

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