Written by Paige Eisemann, Photos by Robin Jordan
Clarksville, TN – The Little People of America organization (LPA) defines dwarfism as a medical or genetic condition that usually results in an adult height of 4’10” or shorter, among both men and women, although in some cases a person with a dwarfing condition may be slightly taller than that. The average height of an adult with dwarfism is 4’0, but typical heights range from 2’8 to 4’8.
Only 1 in about 30,000 children is born with a specific diagnosis of achondroplasia each year. Research states that there are about 250,000 in the world with this condition. Although there are more than 400 diagnosed types of dwarfism, according to the LPA, achondroplasia accounts for nearly 70% of all cases. Most children born with this condition are born to parents of average stature as the result of a change or variant in a gene, which causes it not to function properly.
In many cases, these children have siblings of average stature. It is also possible for a little person to have children of their own of average stature, however there is a 75% chance that their children will have some form of dwarfism. How can this condition affect a child, their family, and their community? One Clarksville family is learning and advocating for their daughter while educating others.
Anthony and Robin Jordan and their young son, Frank, were ecstatic when they learned that their family was growing. While they awaited the arrival of their little girl, they were told that she had some form of skeletal dysplasia. Doctors were grim, telling them that the prognosis was likely fatal. Thankfully, Robin began researching and connected with adults and families in Middle Tennessee who have achondroplasia through a Facebook group.
Kelsey Hankins Hughes invited Robin and Anthony to her home for lunch, and Robin states that everything shifted. Far from the “doomsday” outlook she had been given initially, she recognized that their daughter would be as beautiful, successful, and vibrant as this young woman. From the moment in 2023 when Diana was born, she has delighted her family and charmed everyone she meets.
How does achondroplasia affect children such as Diana? According to the LPA, “Dwarfism varies from condition to condition, and with the severity of that condition in each individual. However, the majority of LPs enjoy normal intelligence, normal life spans, and relatively good health. Many will require surgeries or other medical interventions to address complications and maximize mobility. Orthopedic complications are not unusual in people with disproportionate dwarfism such as achondroplasia and diastrophic dysplasia, and sometimes surgery is required.
A common problem, especially in adulthood, is spinal stenosis.” Robin shares that even though she (and later Diana) are patients of esteemed Vanderbilt University Hospital, there are no physicians in our region who specialize in skeletal dysplasias. Due to the relative rarity of dwarfism, most in the medical community have little or no experience with the condition. Thankfully, the Jordan family was connected to a genetic counselor and patient advocate named Peggy Modaff at the University of Wisconsin, Madison.
Modaff and the entire staff at UW collaborate with local doctors to provide the specific care that Diana needs. Since her birth in 2023, the family has traveled to UW for specific tests so that doctors can create baseline data to monitor Diana’s needs as she grows. Robin says that Madison, WI now feels like a second home because the hospital and community are so warm and welcoming. They always make the trip a vacation for the whole family, enjoying the area and celebrating their time together rather than making the doctor visits gloomy or scary.
They are fortunate that Diana is a very healthy little girl and recognize that many families of children with achondroplasia have to visit UW far more often than they do. The family continues to meet and learn from the LPA organization, the Region 13 chapter of LPA (which encompasses TN, GA, MS, and AL), and other advocacy and educational groups. Robin specifically advocates for every family to utilize the LPA’s Medical Advisory Board for assistance in finding appropriate and specialized care.
Dwarfism is a recognized condition under the Americans with Disabilities Act, but this view varies widely among those who are affected. Robin states that other than medical experience, Diana’s life is as normal as any other little girl. A big part of the reason that Anthony and Robin (and their family) work to advocate for Diana and others like her is that they now can personally attest that most little people’s lives are just like the lives of people who are average height.
Many people require some accommodations in order to navigate the world: whether that may be glasses, hearing aids, walking supports, wheelchairs etc. Most little people only need a step stool! Robin shares that recently, the City of Clarksville has been working to make government buildings, playgrounds, and parks more accessible and inclusive. She cites the dedication of Lauren Winters, Grants Director, to the success and thoughtfulness of our city for all of those who need accommodations.
On October 15th, 2024, a new advocacy campaign launched across the United States. Robin’s friend Rachel Wherley and actress Terra Jole (of Dancing with the Stars fame) spearheaded the “Mascots Matter” campaign. According to their website, “The Mascots Matter campaign is working to retire the ‘Midget’ mascots still used by 5 high schools across the country. The term ‘Midget’ is a highly offensive slur for little people, rooted in exploitation and cruelty. Our goal is to educate communities about the harm this term causes and advocate for the adoption of inclusive mascots that foster respect and dignity for all.”
This is only one of the many advocacy opportunities available for those like the Jordan family who hope that our society can become more educated about the dehumanizing attitude that has been prevalent for generations. Actor Peter Dinklage famously summed up the need for advocacy with his statement, “Dwarves are still the butt of jokes. It’s one of the last bastions of acceptable prejudice.”
The Jordans often encounter people who are curious about their beautiful little girl. Many times people make comments or have questions that could be considered offensive, that Robin worries might be hurtful to Diana. They ask people not to whisper but instead, just ask their questions. They try to advocate on a “macro” level, rather than “micro”. Affecting real change and increasing understanding happens on a societal level, rather than one person at the playground at a time. Even in a community as large as Clarksville, many people have no experience or understanding of achondroplasia.
This is why campaigns such as “Mascots Matter” are important. Education equals understanding. Robin and Anthony have met some amazing people since their precious daughter was born, affirming to them that Diana can be a successful artist, doctor, lawyer, researcher – following any of the examples of successful and impactful little people they are meeting along the way. This family is sharing the message as they learn and encouraging others in our area to learn along with them. Our community continues to work hard to provide equity, inclusion, and accessibility for all, and that includes little people.
For more information, please visit:
www.lpaonline.org/
www.facebook.com/LpaDistrict13/
https://linktr.ee/mascotmatters
