the m-word you can't say
Jillian Ilana has some thoughts on dwarfism.
The public debate on Native-American imagery in sports, although far from over, resulted in a lot of positive change. But did you know that many sports teams often denigrate people with disabilities, too? Currently, a handful of high-school sports teams use the derogatory term “midget” for their mascots. The Little People Association (LPA), a nonprofit devoted to supporting the community believes that this term is a slur. "The dwarfism community has voiced that they prefer to be referred to as dwarfs, little people, people of short stature or having dwarfism, or simply, and most preferably, by their given name," the group told Insider last year.
Since October is Dwarfism Awareness Month, a moment dedicated to raise positive stories and information about the lives of little people, I thought I would share a lightly edited interview I did with a Dwarfism awareness blogger and advocate, Jillian Ilana. We met at a disability gathering in Central Park last summer organized by Wheel New Yorkers and I’ve watched her scintillating posts all over my news feed ever since.
As she explains in the interview, when we think or talk about people with disabilities, we don’t often think of little people, but my hope is that this can begin to change with greater representation and conversations like this.
Liz Plank: October Is Dwarfism Awareness Month. What does this mean to you and what are the issues and obstacles that your community still faces?
Jillian Ilana: Defining what Dwarfism Awareness Month means to me is a somewhat complicated question to answer and has changed over the years. A large part of it is using this month to educate about what it really means to be a little person in an average-height world. This year, every day of October I am writing a younger letter to myself at each age, explaining what I was thinking and describing, highlighting key events such as surgeries and the scars left behind, moments where I taught my peers what being a little person means - to make them more comfortable with being around a little person, the first time I remember being called the “m”-word and the impact it left on me, and not being afraid to discuss the times where I was feeling invisible, where I was struggling with being a little person, where I didn’t want to be a little person. I think it’s important to talk about it now because when I was younger I didn’t have people to follow on Instagram or listen to in a podcast who simply got it, who understood, who made me feel seen and heard. During Dwarfism Awareness Month, one of my goals is to let my little people followers know that while being a little person can often feel like an isolating experience, that they are not alone.
There are a lot of issues our community still faces and there are times where it feels like society is choosing to remain blissfully ignorant. Accessibility is a big issue. Things are often out of reach, whether they are too high or too far.
I think the bigger issues our community faces on a daily basis are social ones. One, we are constantly subjected to dehumanization. Little people are pointed at, stared at, laughed at, having pictures taken without consent, etc, even picked up and tossed. Two, in conversations around adaptive and inclusive design, accessibility and disability rights, etc. in my opinion it feels that little people are often left out, and I’ve struggled to find an answer as to why. Part of it, I feel, is that being a little person does not fit society’s idea of what a disabled person looks like. After all, the symbol of the disability community is the wheelchair. Most little people are ambulatory, have full motor function though their movement is limited in other ways. At the same time, we don’t fit the description of what a non-disabled person looks like. Another part of it is that, within the community, there is a hesitation to define ourselves as disabled. Growing up, I was taught that there is nothing I can’t do, I just do things a little differently. It wasn’t until I was older that I defined myself as disabled.
Liz Plank: One thing you’ve gone into detail about with me is how common harassment can be for little people and how there are often sexual undertones, or even overtones, that make it difficult to just get around safely and exist in the world. Can you tell me what kind of stuff you have to deal with?
Jillian Ilana: Speaking for myself, I’ve been objectified and fetishized for being a little person. I’ve had men on dating apps match with me only to ask what sexual favors I could perform while standing up, to tell me I’m an item they can check off their bucket list. Most recently I had this exchange:
On the street men will leer, ask if I have a boyfriend, cat call. When I was younger (under the age of 18) a man (over the age of 18) approached me, asked if I had a boyfriend, and tried to seduce me. Then and now I’ve had people interrupt conversations or stop me on the street to tell me I’m pretty or tell me I have a cute butt. One man even stopped the subway doors from closing to touch me and tell me I’m beautiful.
There was instance where I was sexually assaulted. I was at a festival with friends during my freshman year of college when a man came up to me and asked if he could motorboat me [Editors note: “motorboating” is crude slang for a sexual act where an individual places their head between a woman’s breasts and makes a sound meant to simulate a boat engine]. I said no, absolutely not. At first he respected that and he hung around with me and my friends for a little while (why we allowed that, I don’t know) When we said goodbye to him, he asked for a hug, and then motorboated me…while my friends watched (I think they were too stunned by what happened and did not know what to say or do).
Liz Plank: How can non-disabled people get involved when they see a little person being the target of unwanted attention? Any do’s and don’ts?
Jillian Ilana: Do treat a little person like a person. If you have sincere questions about what it means to be a little person, ask. Speaking for myself, I would be happy to answer any question asked with good intent, understanding that I may be the first little person that they are meeting. Don’t point, don’t stare, don’t take pictures, certainly do not ask to pick them up or simply pick them up without their consent.
Parents, teach your children not to point, stare, laugh questions, etc. At the same time, if they are curious and ask you to explain what they are seeing, don’t discourage them from asking questions. It’s okay to invite your child to introduce themselves, to ask questions. At the same time you must respect if the individual chooses not to answer.
Liz Plank: One thing I also wanted to talk about with you is how to create an accessible and inviting space for a little person. The first time you came over to my apartment I didn’t have a lot of furniture because I had just moved in, and I quickly realized that my seating options weren’t ideal. What kind of small and big things can people do to create a welcoming space, whether it’s at your home or if you’re organizing an event?
Jillian Ilana: For the record, when invited into someone’s home environment, I’m never expecting it to be perfectly accessible. After all, it is their home. When coming to your apartment, I simply made it work and not once did I feel that the space wasn’t inviting and that my body wasn’t welcome.
Growing up I lived in a home that was not fully accessible and needed modifications and adaptations such as stools everywhere, lowering the showerheads, sticks in light switches, and turning the sink sideways (best adaptation ever). Little people are some of the most resourceful and innovative people I know and are always finding new ways to adapt their environment and making the space work for them.
That being said, if you are designing a space with little people in mind, keep in mind that we are people of short stature. Have at least one step stool available, if you can have more than one step stool of varying heights even better. At the kitchen and bathroom sinks, place the soaps in reach if possible.
Liz Plank: You’ve been very vocal about is the use of “midgets” for school mascots which you explained is dehumanizing to little people. What kind of myths about your community persist in our popular culture?
Jillian Ilana: The “m” word, as defined in the dictionary, is “a very small person; used to describe an object that is much smaller than usual”. Popularized by P.T. Barnum and his circus, it quickly became linked to short people on display for entertainment or sport and is now, unfortunately, ingrained in society’s vocabulary. As you said, there are five schools in the United States that have the “m” word as their mascot and, when asked to change it by the little person community, pushed back and refused to change.
The dwarf body has been put on display in royal courts, freak shows, circuses, etc going all the way back to ancient times. Little people have been culturally depicted as mythical creatures, humanlike rather than human, objects of entertainment and ridicule. Think the Munchkins in The Wizard of Oz, Oompa Loompas, the Seven Dwarfs, the dwarf-tossing scene in The Wolf Of Wall Street…the list is seemingly endless. I think these depictions of little people has seemingly given society to dehumanize little people in a way that they don’t dehumanize people with different disabilities, and it has in instances led to fatal consequences.
Liz Plank: Over your lifetime have you seen progress? Where are you seeing positive portrayals of little people that help bust those old, tired stereotypes?
Jillian Ilana: Yes, progress has definitely been made, even though there are days where it doesn’t feel like it. But progress has been made.
I think the most obvious example of the positive depiction of little people is Peter Dinklage as Tyrion in Game of Thrones. However, there is a role played by Peter Dinklage that I think is more important and that is of Fin in the 2003 indie film The Station Agent. If you haven’t seen it, I highly recommend that you do. It is a very honest, very real, very human portrayal of what it is like to be a person with dwarfism in an average-height world.
The most positive portrayals of little people are the ones that depict little people as people. A most recent example can be found in Season 3 of Derry Girls. In the series finale, there are three little people characters. The first, as portrayed by Irish advocate Sinéad Burke, is a reporter, the second is a young girl at her First Communion party, the third is a guest at a birthday party. What makes these portrayals so positive is that not once did they make a big deal over the fact that they were little people, they were just people.
Liz Plank: What’s the last thing that gave you hope?
Jillian Ilana: When I first saw this question I honestly had no idea how to answer. But I think it has to be this DM I recently received from a mom whose 12 year old daughter has achondroplasia (same as me, the most common of the 400+ types of dwarfism). She wrote to thank me for the daily letters I’ve been writing to myself throughout Dwarfism Awareness Month and that her daughter has read them all and told her that not only is what I’m saying resonating with her, but that she’s learning new things. She goes on to say that she thinks it is so important for both her and her daughter to hear from little people who came before her, who understand, and who can be role models.
Her message exemplifies why I’m doing my advocacy. I’m not doing it for me. I’m doing it for my younger self and the next generation.
I want to thank Jillian for taking the time to share her important work with us and before we say goodbye, I’m leaving you with a brand new episode of my new podcast Race To 35 that I’m making with Monica Padman and Dax Sheppard over at Armchair. This week I get stabbed by Monica, we talk to January Jones about freezing her eggs and having a baby on her own and also do a deep dive on the lies we tell pregnant women with Professor Emily Oster. You won’t want to miss it!
Excellent interview once again. A life changing event for me was meeting and teaching A, a bright and talented middle schooler who happened to be a little person. I read her IEP with its detailed list of accommodations but it only gave a one view of her. I treated A like all my other students, yet certain situations felt awkward. Should I lower the hanging bathroom passes for her? Should I pick up things that fell off her desk? I decided to meet with her after class and ask her what she needed to be comfortable in my class. This conversation was important for both of us. She told me how happy and included she felt. At first she was reluctant to “criticize” my room. A had been taught to just accept inaccessible environments. Together we went through my room and tweaked any physical challenges that prevented her from 100% participation. That opened the door for lots of future discussions.