Many people associate October with breast cancer awareness. What you may not know is that October is also National Dwarfism Awareness Month.
Little People of America, a national organization that provides peer, parent and medical support for people with dwarfism and their families, declared October National Dwarfism Awareness Month in September of 2011. In designating an official month for dwarfism awareness, LPA hoped to raise positive awareness around dwarfism, address common misconceptions surrounding little people and increase opportunities for people with dwarfism across the country.
For local little person Kaitlyn Betts, the month of October is an opportunity to educate the public and create awareness. “We’re normal people,” says Betts. “We can be your politician, your doctor, your lawyer, your mechanic. It’s about awareness of the little people in the community and how to approach people with dwarfism, what to do and what not to do.”
Betts and her son Caleb have achondroplasia, one of over 200 distinct forms of dwarfism. This form of short-limbed dwarfism is caused by an inability to convert cartilage to bone, particularly in the long bones of the arms and legs. “Your torso is the same size as mine,” explains Betts. “But my head is a little bigger than yours, and my arms and legs are smaller.”
Achondroplasia is caused by a mutation in the FGFR3 gene. A baby born to an individual with achondroplasia like Kaitlyn will not necessarily be a little person; there is only a 50% chance of passing on the gene with each pregnancy. “I obviously carry the gene because I had Caleb,” says Betts, “but if I had another baby, it’s not 100% sure that I would have another little person child.” It’s also possible for two people of average height to have a little person child. In fact, most cases of achondroplasia are not inherited; approximately 80% of individuals with achondroplasia are born to parents with normal stature.
For Betts, Dwarfism Awareness Month is an opportunity to clarify the terminology surrounding little people. Many people may not know that the term “midget” is an inappropriate and highly offensive word for most little people. In fact, the LPA has registered a complaint with the FCC over use of the “m-word.” The term dates back to PT Barnum days, when so-called “midgets” were part of the entertainment. “Words are important,” says Betts. “It’s about how we are perceived to society. Little people aren’t a sideshow or entertainment.”’
Growing up with achondroplasia, Betts felt fortunate to be protected by her parents, and teachers and to receive the accommodations she needed to be successful in the classroom. “Now as a parent looking at my son who has the same as me I want to be that shield, but with him, I have to let him have those moments by himself and be able to stand up for himself.”
In his Bright Beginnings classroom at Lebanon Road Elementary, Betts has tried to strike a balance between providing the modifications her son needs to navigate the classroom while also preparing him for life in a world of average-sized people. Caleb has a stool to rest his feet on (so they don’t dangle and fall asleep), a series of stools to use around the classroom and lowered hooks and cubbies, but Betts hasn’t asked them to make major modifications like lowering sinks or countertops.
“He’s going to live in this average-height world for the rest of his life. The average height world isn’t going to adapt to him, he’s going to have to adapt to it,” says Betts. “I would love every counter he goes to to be lowered by two feet so he can have a normal experience like his friends, but that’s not going to happen, that’s just not realistic in this society.”
Betts also prioritizes being active in Little People of America. “I make sure we’re involved in LPA community big time,” says Betts. “The LPA community is our safe haven when we need it.” For four-year-old Caleb, who’s just starting to realize he’s different than his same-aged peers, LPA provides a critical opportunity for him to understand and accept himself as well as socialize with like-sized peers. At the LPA conference in Atlanta this past month, Caleb was thrilled to make fast friends with two little people peers with whom he was able to run around and play eye-to-eye. “He can have that in Mint Hill,” says Betts, “but it’s not the same when he plays with an average-sized friend, and they have to slow down because of him.”
Betts’ ultimate message is clear: education is important. “If your child ever has a question about us, about Caleb, about me, just ask,” says Betts. “I’d rather you ask questions and not hide your own child from him. Don’t hinder a teaching opportunity. I don’t want people to ever think they can’t ask me a question.”
